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“So…you don’t think having permanent diarrhea is…a sign? Unusual?” asked my functional medicine practitioner, a different expert than my Lyme doc.

“Nope!” I said. And told her that after taking antibiotics for 13 months, I had just figured that diarrhea was my new norm after so much damage and trauma to the gut. Even 2 years after I had finished taking them. In hindsight, I really should have given it more thought.

She didn’t think that was the case, however, and suspected food allergies were to blame. The Alletess allergy test she ordered revealed an IgE allergy to almond. This type of antibody result typically indicates a more permanent allergy to the food. And as a result, this food should be completely avoided.

It felt like I’d just been caught red-handed in a twisted game of “Clue” for Food Allergies! “The Lyme Whisperer, in the kitchen, with a KIND bar!”. There was no hiding it. I had been guilty of poisoning myself…with almonds! So much worse than Colonel Mustard, in the study, with a candlestick!

I’d have to avoid the single largest staples in my diet. Almond butter. Almond milk. Handfuls upon handfuls of almonds that I grabbed as breakfast, lunch, dinner or snack. I was sentenced to a life without almonds, with no chance for parole.

The Alletess results also showed an IgG food sensitivity to gluten, wheat, peanuts, lima beans, cashews, cinnamon, cocoa, coconut, haddock, honey, malt, cow’s milk, green pea, black pepper, shrimp, sunflower, baker’s yeast and brewer’s yeast. IgG reactions are typically scored from 1-3, with 3 being the most significant. This type of food sensitivity can resolve with time, after a period of avoidance that allows the gut to heal.

So what happened when I avoided all my IgE and IgG triggers for 2 months? NO diarrhea. None. For the first time in 2 years.

What happened when I tried to reintroduce some of the IgG foods? Diarrhea. Guess my gut isn’t ready yet. Back to avoidance.

What happened when I tried to reintroduce my IgE food–almonds? Nothing! Because I haven’t and won’t reintroduce them. I’m deathly scared of them now, actually. Like Mrs. Peacock, with an axe, in the cellar scared! And I’ve found new staples. Soynut butter. Pumpkin seeds. Brazil nuts. Hazelnuts.

My message to you: Make sure you have a “clue” about your food allergies and food sensitivities, even if you don’t feel bad. I didn’t feel badly and could have lived with the diarrhea and continued to shrug it off. Now, I feel like I have an even better path to health in my post Lyme treatment recovery phase. It’s important, however, regardless of what phase in your Lyme journey you are. Eliminating foods you are allergic or sensitive to will ease your already compromised gut and reduce inflammation. And ultimately, it will give your body another edge in the quest for the best fighting chance. And we are all about fighting chances!

That’s all. From the Lyme Whisperer, in the t.v. room, with sesame nut butter on a rice cake.

Dear Silk Almond Milk: I am going to Miss You!

Dear Silk Almond Milk: I am going to Miss You!

But have no fear! Rice Dream milk is here!

But have no fear! Rice Dream milk is here!

In my new book, Lyme Whisperer: The Secret’s Out, I provide The Top Five Borrelia Busters, Top Five Dietary Do’s and Don’ts, Top Five Right-On Resources, and Top Five Awesome Affirmations (pages 147-157). Today, I share my expertise in work and hockey mom travel with the Top Five Lyme Whisperer Traveling Tips!

1. REST FOR THE BEST. For the best outcome, I start scheduling extra rest and down time 2-4 weeks in advance of a scheduled trip. Having just been to London and New York, without relapse or incident, I can attest to the importance of this. For instance, before my overseas trip, I started going to bed an hour or two earlier, taking weekend naps, shopping online instead of meandering in stores, not hosting sleep overs for my kids, not attending evening work dinners, and exercising 3 days a week rather than 4-5. The goal? To spare my energy reserves and stamina.

2. HYDRATE. About a week before air travel, I hydrate very consciously and increase my daily water intake for a full 7-days. Because on days that I fly, I tend not to drink that much and actually reduce my water (and coffee) intake….because of my “Mad Bladder” which would otherwise have me using the bathroom every hour or so on a cross country or trans Atlantic flight (described on page 35 in the book)! Having hydrated so well in the days before minimizes any negative impact of my not drinking as much on the day of.

3. GO NUTS. I’m nuts about packing nuts! Which used to include almonds. Now that I’ve realized I’m allergic to those, I pack pistachios, brazil nuts, hazel nuts and pumpkin seeds as well as individual packets of sunflower seed butter. Not into nuts or not able to eat them? How about power packing some quinoa chips, Mary’s Gone Crackers, or Go Raw Chocolate Cookies? Don’t leave it to Jet Blue to provide you animal crackers or blue Terra chips. Pack for energy! Pack for sustenance! Pack a peanut butter sandwich on gluten free bread! This is so important to me that I leave my laptop at home and pack my laptop bag FULL of power snacks.

4. PLAN, PACK, PLAN, PACK. Recently, for my son’s hockey tournament away from home, I had to pack for 3 days worth of mini “Me meals”. These were the meals and snacks that would cover me for an entire weekend of gluten free and dairy free eating. Fortunately, we had a fridge and kitchenette in our hotel rooms. I just figured whatever the other hockey parents would be eating and drinking, I wouldn’t be able to have any. So in addition to my power snacks (see number 3 above), I packed a cooler with sausage, frozen egg patties, daiya dairy free cheese, cold cuts, hummus, berries and flavored seltzer water. For me, protein is my most important dietary need and I always make sure I plan my day and meals around it. On my recent trip to London, I packed my protein AND my protein shaker. I kept a serving of protein in my shaker and put it in my purse. During the day while touring, I simply added water to keep myself fueled and energized. I didn’t go hungry and was able to endure the weekend. Plan, pack, plan, pack! That’s the mantra!

5. AXE ANXIETY. Chop away at your anxieties any way that you can. I buy entertainment magazines because they are a treat for me, distract me, and keep my mood light. Or I bring that new book I’ve been meaning to read and make time to relax with it. I take l-theanine supplements, which provide the compound found in tea responsible for it’s relaxing properties. And perhaps above all, I will have done numbers 1-4, which will have helped to alleviate my biggest fears and anxieties about not having enough food, water or rest to fuel myself and fight off Borrelia or a relapse.

Happy and safe travels, Whisperers! You CAN do it!

My daughter and I in front of Buckingham palace last month!

My daughter and I in front of Buckingham palace last month!

November 22, 2014–Lyme Whisperer announces launch of new book “Lyme Whisperer: The Secret’s Out.” “The Secret,” says Lyme Whisperer, “is that Lyme sufferers are not crazy…and they’re not alone.” This book will help generate awareness, create conversation, and shed light on the very dark issue of Lyme disease, warns Lyme Whisperer. At the time of this release, Borrelia could not be reached for comment.

In Lyme Whisperer: The Secret’s Out, Joy lets you in on her conversations or “whispers” with Borrelia, the bacteria that causes Lyme. If you’ve ever wondered how Borrelia could be compared to the White Witch from the Chronicles of Narnia, the transformer Megatron, the serpent monster from Harry Potter, Snow White’s apple, a Disney World roller-coaster ride, The Perfect Storm, a World War Z zombie, or Gone with the Wind, then this book is for you. If you haven’t wondered any of this before, you should be wondering now. This book is for Lyme warriors, Lyme friends, Lyme family, Lyme doctors, Lyme legislators, the Lyme curious, and even Lyme skeptics. It’s for everyone because quite simply, Lyme is the epidemic of our time. Join Joy as she whispers defiantly to Borrelia in her fight against Lyme. A fight filled with humor and hope. She’s not crazy. And she’s not alone.

Joy Pelletier Devins is a loving mother of two and doting adversary of one, namely, Borrelia. Joy is a vice president with a degree in biochemistry and has worked in the nutrition industry for over seventeen years. She is an avid runner and sneaker shopper. In addition to blogging at LymeWhisperer.com, her passions and interests include being outdoors, bonding with hockey moms, Starbucks runs, British newscasts, lip syncing to “Karma Chameleon,” avoiding dog bites, skiing New Hampshire mountains, and dark chocolate with peanut butter. Joy was diagnosed with Lyme disease in November of 2010.

Borrelia was last seen hovering like a coward in biofilm. Any information pertaining to the whereabouts or fate of Borrelia can be left as comments below 🙂

BOOK AVAILABLE AT BarnesandNoble.com

sharonpictures

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.org “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 ILADS.org!

Dr. Horowitz and I at ILADS 15th Annual Symposium

Dr. Horowitz and I at ILADS 15th Annual Symposium

Her Name Was Leslie

She pussy-footed in
From the humid New Hampshire night
Into the elevator we went
As she breathed deeply and sighed.
“Are you here for the Lyme meeting?”
She asked in barely a whisper
“Yes,” said my friend and I.
“Let’s all go together.”

Her cheeks were flush
Her eyes a somber blue
There was no sparkle or shimmer
Just a dull drab hue.
“What is your name?” I asked
She looked so familiar
“Leslie” she said meekly
I knew our stories were similar.

The elevator door opened
To the church basement hall
Husband-n-wife, father-n-daughter,
Moms and friends, came one and all.
We sat in a circle
Some eager, some reluctant
Most there that night
Had just been inducted.

Into the Hall of Lyme, that is
So new to the journey
They’d thought the roller coaster was over
But have learned otherwise in a hurry.
Diagnosis was just half the battle
It became painfully clear
That the next set of challenges
Would bring as much turmoil and tears.

Her name was Leslie
She sat silently stunned
Her head started spinning
As the facilitator begun
One at a time, from right to left
Symptoms were listed, antibiotics too
Around the circle we went
About politics and Western Blot blues.

Her name was Leslie.
And she sank in her chair
Overwhelmed and unprepared
For this type of chatter.
Co-infections and rashes
Diet, studies and doctors
Herbs, probiotics, and protocols
It all made for mental clutter.

Her name was Leslie
Her turn had finally arrived
After almost three hours
It was now a quarter of nine.
She searched the air
For the words she couldn’t find
For the sentences she couldn’t string
For the blanks in her mind.

She’d seen the bite
Next to her pregnant belly
She’d felt such anxiety
It had turned her nerves to jelly
She’d overcome stroke-like episodes
And battled numbness and sweats
She cried for her babies
Worried about their exposure threat.

Her name was Leslie
And I wish I could have said
Leslie, please don’t worry
Your tired pretty head.
I’ve had stroke scares and anxiety
Just like you.
I also had symptoms during my pregnancy
And worry my baby has it too.

She had finally shared her story
It sparked much advice, well-intended
But she was exhausted and confused
Paleness soon descended
I didn’t like what I was seeing
I knew where this would go
Her heart was racing
And the walls would soon start to close.

She was having an attack
I wanted to reach for her hand
Please Leslie stay strong I thought
Don’t give in to the panic
But before I knew it
She’d ran out and left
So swiftly and abruptly
I hadn’t a chance to interject.

I wish I had chased after her
As I heard footsteps running above
She was out the door and gone for good
Before I could give her a hug.
Her name was Leslie
And I felt all of her pain.
Please, Leslie, please
Come back again.

You’ll find a home here,
I promise you will.
Or another group somewhere
You’ll need them still.
Don’t be deterred
From finding your place
Among the others
Who have stared the beast in the face.

Her name was Leslie
And I don’t want her to feel alone
Please, Dear God
Help find Leslie her home
Among supporters and cheer leaders
And listening ears
Shoulders to cry on
And smiles to allay her fears.

Leslie, if you are out there
There is so very much to take in
We’ve all felt like you have
Too overwhelmed to begin.
If I could tell you one thing
It would be this
There are many people and places
That can help you feel lifted.

Lyme support groups can help
If you find the right fit
Search books, blogs and Facebook
For Lyme voices and advocates
Her name was Leslie
She has a place in my heart
As do all the “Leslie’s” out there
Just getting their start.

There’s a new class of Lymie
Those who’ve made it through the thunder
Who can help the Leslie’s of the world
Like me, the Lyme Whisperer.
Because once we’ve weathered the storm
We turn and extend our hand
To pull the next in line
Towards the shores of sun and sand.

Her name was Leslie
I regret I didn’t reach out
Please, Dear God, just lead Leslie
To the hand that can pull her now.

Lean Mean Detox Machine

Dr. Mark Hyman, M.D., has done it again, Borrelia. He’s written another New York Times best seller. Dr. Hyman’s latest effort is The Blood Sugar Solution 10-DAY DETOX DIET. I wrote about Dr. Hyman’s original Blood Sugar Solution book in Lean Mean Lyme Fighting Machine back in August of 2012. In that blog entry, I imagined a sugar free Lean Mean Lyme Fighting Machine to be like the heroic and mighty Transformer, Optimus Prime.  I discussed how fighting sugar cravings and sugar spikes was important for fighting spirochete sugar junkies such as yourself, Borrelia. Did you know, Borrelia, that there are over 600,000 food products on the market and 80% of them have added sugar? Did you know that mice given the option will choose sugar water over cocaine water, as it is more addictive? Just read Dr. Hyman’s book for more sugar secrets! 

Yes, I’m happy to report that his new book inspires me to be an even Leaner, Meaner Lyme Fighting Machine! It’s my favorite of all his books. I read it in its entirety on my way to a conference in San Francisco where I would have the opportunity to see Dr. Hyman in person. I wanted to make sure that I had done my “research.” I wish all the passengers that day on my JetBlue flight had had a copy to read instead of watching their television monitors with commercials for Lucky Charms and Coca Cola.

While the book is positioned for weight loss, it’s really all about toxin loss. Sounds lymetastic, right? Detoxification is so important to being a stealthy, healthy Lyme warrior. I also love that it’s a 10-Day Challenge. I can commit to 10 days! Especially if it’s 10 days of agony and sugar starvation for you, Borrelia. Now THAT’s sweet! Hee hee! I did in fact do a detox challenge earlier this year. I had headaches and was genuinely sad about not having coffee. But I did it. I didn’t lose weight, but that was not my goal. This Lyme body is in a very delicate state of balance and I did not want to offset that! So I was careful to make sure not to shed pounds.

My goal instead was to activate and prime my body’s natural detox mechanisms with laser sharp focus. I followed Dr. Hyman’s two steps for detox success: Out with the Bad, In with the Good. Simple, yet clear and effective. Out with the Bad was hard. Not hard because of lack of willpower, will power comes fairly easy to me. No, it was hard because most everything has added sugar in some form or another…and it all had to go. Agave, brown rice syrup, honey–things in many of my “health food” snacks and beverages like bars and bottled teas–had to go. I said time-out to dairy as well as grains, even gluten-free ones, as part of this detox jump-start. Even beans had to go. And of course my Starbucks and Shiraz. This was the cleanest, meanest detox I had ever attempted.

At the same time, In with the Good was fun and rewarding. I was loving my new decaf mint morning tea, was very satiated with my breakfast of hard-boiled or scrambled eggs, and loved to make my mountain-high Mediterranean kale salads drizzled with extra virgin olive oil for lunch and dinner. I snacked on almonds and sunflower seeds and enjoyed veggie/berry/protein smoothies. I do LOVE to eat after all, Borrelia. And I love the foods that boost my detox pathways, reduce inflammation, improve gut function and balance blood sugar. Therefore, I really enjoyed my tofu broccoli ginger cilantro curry stirfrys and lemon/cucumber water! I also fed my soul with outdoor running, journaling, relaxation and sleep. If I’m not mistaken, Borrelia, you also got to enjoy the In with the Good supplements I took, including a multivitamin, fish oil, vitamin D, fiber, magnesium. 

Ah yes, it’s nice to take the time to transform like this. I will try to do so several times a year, though much of the concepts I have held on to (I am not following a dairy free or Starbucks free diet at the moment). It IS a battle between Autobots (that would be Optimus Prime or us health conscious consumers) and Decepticons (that would be Megatron or the deceptive food industry). I mean, Transformers the movie was promoted heavily by Burger King, after all. In fact, if you are fascinated by Big Food and Big Government influence over this nation, please see the documentary Fed Up in theaters now, or read this book. The movie was executive produced by Katie Couric and features Dr. Hyman.

Thank you, Dr. Hyman. For transforming the way we think about food and health. I personally am a Leaner Meaner Lyme Fighting Machine for it…an Optimus Lyme.

10-Day Detox Diet

Lyme Whisperer (left), Dr. Hyman, Lindsay at the book signing of The Blood  Sugar Solution, New York 2012

Lyme Whisperer (left), Dr. Hyman, Lindsay at the book signing of The Blood Sugar Solution, New York 2012

Workin’ 9 to Lyme

Having a full time job and Lyme disease is a challenge to say the least. But I’ve learned to turn my limitations from the disease into strengths so that my work doesn’t suffer.  Here is a Top 10 List of how Lyme disease has actually made me BETTER at my job:

10. Marketing materials?  I make them more concise, simple, and to-the-point when I edit them. Because that’s what my easily confused mind needs. The end result? A stronger message for the company.

9. Powerpoints? I use images and more images. Because lots of text overwhelms. The end result? Engaging and easy to remember presentations.

8. Business Plans? I start with a pie chart. Cut it into four “slices”. Fill in each slice with a main objective for the year. The end result? Strategy simplified. Serve it up!

7. Quarterly calls? I talk swiftly. I deliver what I need to deliver in 35 minutes instead of 60. The end result? No-bull reporting on results and I won’t lose my focus and thoughts halfway through.

6. Time management? Having a shorter attention span means I carefully plan each hr with something new to tackle. The end result? There’s no more procrastinating, every little project gets touched!

5. Organization? Mental clutter on top of mental clutter means lots of physical clutter. The end result? I’ve stopped filing physical documents and only file electronically, so maintaining my files is easier. 

4. Leadership? Some days, pep talks and motivational meetings are “all” that I can handle doing. The end result? I invest more time and energy focusing on my employees and leading by example than ever before.

3. Social Responsiblity? My level of compassion for those that suffer or have been through a significant challenge is at an all time high. The end result? Helping to institute and shape my company’s corporate responsibility program and having that as part of my legacy.

2. Financials? Financials schminancials. I can’t possibly retain all the numbers I need to in this brain. The end result? I don’t focus on my financials and make everything I do about the customer instead. Seems to be working for the revenue if you ask me.

1. And a partridge in a pear tree. Wait. What were we talking about??

Happy WTF-iversary, Borrelia

Happy WTF-iversary, Borrelia. What a “special occasion”. It’s the anniversary of the “stroke-like” “date” we shared at Disney’s Animal Kingdom resort on April 23, 2013, which I wrote about in “Mickey Mouse to Borrelia: WTF?!”. Do you, remember “Dear”? I thought I was going to die in front of my kids that night.

So, my “dear” Borrelia. Here is my WTF-iversary card just for you…

 

To the Unlove of My Life

Who continues to be with me every step of the way, dammit

It seems like just yesterday

We walked the Florida sunshine together

Until you decided to be the horrific partner you are

And brought me to the ground

In a “stroke” of sheer evil

Thought I was going to die in front of my kids

But I’m glad I’m alive

To wish you a happy WTF-iversary

 

Things have never quite been the same

Since that fateful day

My left side is weak, weird and wobbly

Post-traumatic stress

Has been the gift that keeps on giving

Thank you but no thank you

Really I insist

That you stop spoiling me

With all your lame surprises

Please and thank you

 

 We’ve been through thick and thin, good days and bad

But I really wish I could just kiss your a$$ goodbye

I don’t need your “gifts”

So on our WTF-iversary remember that

And though you may be in my heart and mind …literally

You will never infect my soul

I don’t know what the future holds for us

But I promise to continue to love to hate you

Forever and always

Happy WTF-iversary

 

Love,

Lyme Whisperer

 

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