Category: Uncategorized


41 years old and back to school and campus! Well, for a mini business retreat. Last week I attended the Tuck Executive Leadership & Strategic Impact Program at Dartmouth business school. How I hid my Lyme brain from a class of 29 other executives,and some of the most prestigious faculty in the country during the 5-day intensive program is worth a degree in and of itself! Better to say “adapted” than “hid” as adapting is what we must all do, working around our limitations when it comes to memory and processing. As life (and learning) must not stop!:

  1. I did NOT do my homework ahead of time, in the weeks leading up to the session. Noooooooo. That would have meant reading 150 pages of painfully detailed case studies only to forget them! Soooooo I read each night only the cases due for the following day. Having the freshest possible memory I could for answering tough questions on the spot the next day was the goal.  It meant missing out on the social activities during the evenings but let’s be real…I have Lyme…I’m not social anyway! In fact it was a great excuse not to have to be social! Win-win!
  2. I raised my hand to proactively contribute comments.  I did so amidst the rapid fire questions from the professors. That way they’d be less likely to call on me as I’d just “had a turn” And that way it was less obvious that I couldn’t remember or process the readings! That’s called a preemptive strike!
  3. I raided the executive dorm’s kitchen for complimentary snacks and beverages. Of course I did! I felt like a 20-something again pulling all-nighters studying and stressing! I grabbed granola bars, waters, fruits and earl grey tea bags, packed them into my laptop bag, and tried to keep my mind as fueled and sharp as I could during class the next day!
  4. I let other leaders be the leader. Kind of against the whole theme and premise of the week, but a survival must. On the day of the team challenges and exercises (like building and solving puzzles and getting through a maze)–I took a back seat, letting others be the minds behind the operations. I had to be the follower and not the leader and that was fine with me if it meant not blowing my cover–that I couldn’t  even grasp the activities at hand!
  5. I created a diversion by highlighting my strengths rather than revealing my weaknesses. At every opportunity, I turned tough questions into a chance to showcase my creative, branding talents. For instance, when asked to summarize the valuable business lessons of the week, I simply replied that “this Princess of Pacesetting has to get Participative in her approach”…referring to–yet deflecting from answering in more detail–some of the complicated technical language and information we had learned. A laugh from the class means I got my point across without blowing my cover! I had survived!

It was a week marked by some of the heaviest brain fog I’ve had to battle through in a while…of course?! Not to mention feeling hormonal and fatigued, but I did it. I adapted, pushed on, performed and contributed in my own way. And as always, the reward is often much greater on the other side from having persevered and succeeded despite everything. And now, I hope this can serve as a reminder and example to anyone striving to be the best leader that they can, Lyme and all.

A morning at Dartmouth as foggy as my brain!!

Sound Familiar? But of course, Borrelia! “The Blunder Games: Catching Fire“–how I am choosing to describe the politicizing of Lyme–has many parallels with the popular movie “Hunger Games: Catching Fire.”

Only the Hunger Games: Catching Fire is science fiction, while The Blunder Games: Catching Fire is clearly science friction.

In the Hunger Games: Catching Fire, the second movie in the films trilogy, the story of Katniss Everdeen, the victor of the twisted and tortured games sponsored by the controlling Capitol, continues. It seems as though her victory has caused an uprising against the Capitol itself by the commons folk whom Katniss represents. As a result of her victory, the commons folk  are inspired to rebel against their mistreatment. Obviously you see where I am going with this analogy. Yes. The IDSA in The Blunder Games is JUST like the Capitol–creating a  dystopian society of misery and disease with their politicized and misguided Lyme treatment guidelines. And whose members have vowed–in written documents–to mount a socio-political offensive against the Lyme community in the name of science. In the name of science? How’s this for science? A list of 700 articles citing chronic infection caused by tick-borne disease. It’s not difficult to see why the IDSA is inciting a gradual, yet promising, uprising by Lyme patients and doctors alike, against their mistreatment caused by the IDSA.

In The Hunger Games: Catching Fire, the movie’s setting is a jungle with a saltwater lake. In The Blunder Games: Catching Fire, the setting is….a “jungle” with salt in the wounds of thousands–millions–of Lyme sufferers.

In The Hunger Games: Catching Fire, the game arena is enclosed by an electromagnetic field. The layout of the game is arranged like a clock, and all of the arena’s challenges and obstacles faced by its participants, including Katniss, occur systematically on the hour. In The Blunder Games: Catching Fire, the clock is ticking. And the longer we allow politicized guidelines to “rule the game” (hmmmmm…let’s see 12 of 14 IDSA Lyme guidelines authors have conflicts of interest), the more patients will suffer, or die, hour after hour.

In The Hunger Games: Catching Fire, the contestants are faced with poisonous fog, torrential blood-soaked rains, and blood-thirsty baboons. In The Blunder Games: Catching Fire, the “contestants” (us) must counter the poisonous rhetoric of media and publications, including the “antiscience” of Lyme advocacy published in the Lancet and recently Lyme Bill: A prescription for trouble in the Boston Globe. They must also weather the blood-soaked rains (yes, blood of the lyme communty is on their hands) of medical professionals who dismiss and ridicule patients, including the experience of my dear friend and Huffington Post Lyme blogging phenom the Dana Parish who was dismissed and ignored by 11 Top NYC doctors.  “Contestants”  must also  deal with the, pardon my chuckles, “baboons” of the NIH and CDC who refer to us as Lyme loonies.

In The Hunger Games: Catching Fire, the story takes place on a scorched, post-apocalyptic nation known as Patem. In The Blunder Games: Catching Fire, as Dana Parish so pefectly put it in her most recent article Lyme: Fight Harder for Science and End this War, it’s time to recognize “the enormity of the scorched earth policies” of the IDSA, CDC and NIH.

In The Hunger Games: Catching Fire, Katniss eventually breaks free from the arena by taking aim with her arrow, harnessing a lightening bolt, and sending the arrow soaring through the electromagnetic field,  penetrating it and giving her an escape route out. In The Blunder Games: Catching Fire, many arrows are being fired at the electromagnetic fields of the IDSA, NIH, CDC, and those of the medical establishment. Arrows from such archery experts as Richard Horowitz whose tireless work has lead to breakthrough persister protocols. Arrows from Dr Ying Zhang at Johns Hopkins University and Kim Lewis from Northeastern University, taking aim at persisters as well, in addition  to Dr. Eva Sapi at the University of New Haven and her work on biofilms. Dana Parish, also an archery darling –for her bold and piercing truths published on the Huffington Post. Steven Phillips, past-president of ILADS, recently educated the media  on chronic Lyme with his matter of fact media style, scoring a bulls eye for the lyme community. The Global Lyme Alliance? Olympian archerists, for their world class education and research soaring to new heights. And lets not forget the fights from the individual states, passing Lyme legislation to protect patients and doctors.

What’s that I hear, Borrelia? It’s the sound of the electromagnetic field short-circuiting, one arrow at a time.

 

hungergames2

Katniss, from “The Hunger Games’ Catching Fire”

 

 

 

The Whirlwind Whisperer

I uncharacteristically decided to sleep in this morning. Which meant waking up at 6:30 instead of 5 am. Intuitively, I must have felt that I’d need the extra rest before my day turned into a woefully yet wonderfully whirling wind of blustering activity. Leaving me breathless yet buoyant. Taxed yet terrific. Vibrating–will that left foot ever stop?–yet victorious.

 

After school drop off, it was a quick stop at the cafe for a medium dark roast and paleo banana bread (how does that work?). Then off to the grocery store before the chaos of Easter shoppers. My intermittent obsession with Pinterest had taken over me this weekend, leaving me with a list of things I didn’t usually buy and didn’t know where to find. Asian chicken wrap mix? Here? No here. Virgin sesame oil? Oil aisle or Asian aisle? Minced ginger. Produce or condiments? ooooh that was exhausting!  And I’d totally forgotten about my celery, carrots, cabbage and kale for this weeks juicing and the quinoa flakes, cocoa and coconut oil for the cookies. The only thing that made me sweat even more than running around was the bill!

 

I can carry $275 of groceries on both arms because I am so darn stubborn about not having to make multiple trips back to the car for bags. But surely I look ridiculous. Like a scarecrow on steroids. After unpacking I had to go back to the car after all for the Easter basket goodies I had hidden in the trunk earlier in the week. Back inside, I ripped open packages of gum and Pez, socks and lacrosse balls, t-shirts and tic tacs to divide between two Minion Easter baskets. I hid these and the pre-filled eggs (the only way to go) in my closet under my bathrobe and checked the task off of my mental list. My ever growing ever cluttered mental list.

 

While I’m here, futzing around in the closet, why not pack for the gala?? As in the Global Lyme Alliance Gala that I will be attending next week in Greenwich with the Dana Parish (have you checked Huffington Post lately? Check it!). Um…Green dress! No, black! No, purple! With boots! No, peep toes! And turquoise! No, diamonds! Can’t forget the snacks–I aways pack snacks–after all a large part of that $275 I just spent was on my stash of Mediterra bars, pistachios and dark chocolate!

 

Okay! Shoot! Never cancelled that conference call which is supposed to begin in 10 minutes! Looks like I’m jumping on. I will be clear and firm that I have no more than 20 minutes…as I still haven’t decided on a dress or stuffed my clothes in my suitcase…not that they need to know that. And on I went, with no indication that I had barely had time to switch from Mom mode to Prom mode to Work mode. You know what? Glad I made that call. Lots of ideas for customer conversion and retention…now, better pack my underwear and pajamas before I forget…

 

Underwear, check! Sneakers, check! Hey, wait a second. Before I pack these sneaks I should get my work out in. Yup! On with the tank and tight leggings, socks and sneaks. Hmmmmm…let me throw–literally throw–some veggies in the Vitamix and drink my greens on the way to the Y since I have no time to eat them, or anything else. I love my frothy celery and enjoy the quick solitude of juice and Juice Newton (Grease soundrack) in my car. Twenty vigorous minutes of intervals at incline 6 on the elliptical, 10 minutes on the stair climber, 1 mile around the track (enjoying an oddball desire to stream some Johnny Cash from Google Music) and 10 minutes lifting weights. Forty something minutes for this forty something girl was just fine for today! But not before having a fellow kettle beller snap a picture of me for my brand’s social media page. I have the ability to fit work in at ANY given moment!

 

And it was a race back home to post said social media pictures and greet my sixth grader from the bus, before going to pick up his sister from her school and taking them for spring clothes shopping–kill me now! Oh man, do we go with the medium or large? Blue, green or red? Or all three? Tanks or t-shirts? Fitted or loose? Adidas or Nike? Hawaiin or golf? After and hour or so it was time to pay up and pig out, this mama hadn’t eaten more than two nibbles all day and was ready to stoop to the healthiest fast food she could find. Enter the chicken pecan salad and chili. Aaaaaaahhh.

 

Full belly meant refueled, just in time to drive the kiddos–Southern New Hampshire Cavaliers at that–to back to back hockey practices.  After laughing and gabbing with some hockey moms (and dads), it was finally home for a SHOWER, a snack and a sudden need to blog about the day, out of need for creative expression and meaningful inspiration! For despite the vibrating left foot, fumbled words and the odd and at times debilitating new issue of  panic attacks at traffic lights, I still pushed myself through the whirlwind of my world. And will continue to do so as long as their is a breath of wind left in me.

 

 

klean2

 

 

 

 

 

Yes, it’s been awhile since I’ve reached out to all of you. I left off blogging in December about the “Beyond Lyme & Other Chronic Illnesses” conference hosted by Dr. Richard Horowitz and held at the renowned Kripalu center in Lenox MA, beginning with “Kripalu: Closing in on the 8%” and “Kripalu: Casting a Wider Net.” Since then, I’ve been busy with urgent kare, kolonoscopys, and even Keeping up with the Kardashians from my kouch as I recovered from a bit of a setback, possibly a kase of lyme and ko-infection komplications. As you can tell, I’ve missed unleashing some kreativity.

But I’m back…with “Kripalu: Circle of Song & Synchronicity”.

After the end of our second day of research, treatments and case studies presented by Dr. Horowitz–and more than 6 hrs of intensive discussions and note taking–our hearts and minds were heavy and fatigued. But somehow, despite it all, the adoring face of Dr. Horowitz shone bright. And that of his wife Lee as well. How did they emit such light? Such energy? Such spirituality? How was their a lightness to their spirit despite the weight of their world ? We would soon find out.

We were invited to return after dinner for an evening of song. I could barely breathe after gorging on the gluten free buffet. But I fought the quinoa coma and found my way to the meeting hall again. We sat in a circle,  huddled together like faithful scouts. Some in chairs, some stretched out on the floor. The same room we had been in all day had somehow transformed with the moonlight…and with the energy of the man with the guitar. He was the glue holding the circle together, the strongest link in the chain–Dr.Horowitz.

How could this brilliant being be speaking of triple persister antibiotic protocols in one minute, and his experience studying with the Tibetan Masters the next? I was moved by his stories of enlightenment and spiritual study. And I could feel the energy of himself and his Kempo masters–and the Kempo masters before them, and before them yet again. I pictured the glowing fireballs of their hearts and bodies, the embers of centuries of spirituality and meditation warming the room and ourselves.

And then, we were warmed with song and the soothing voices of Dr. Horowitz and his wife Lee. This Land is Your Land. Somewhere Over the Rainbow. Turn, Turn, Turn. “When the sun came shining and I was strolling. And the wheat fields waving and the dust clouds rolling. As the fog was lifting. A voice as chanting. This land was made for you and me”…”The colors of the rainbow, so pretty in the sky. Are also on the faces of people passing by. I see friends shaking hands, saying how do you do? They’re really saying I love you”…”To everything turn, turn, turn. There is a season turn, turn, turn. And a time for every purpose under heaven”…

We were warm, content, relaxed and moved. People began sharing stories. Then Dr. Horowitz asked me to share one of mine, one I had shared with him a few months earlier. We had been having dinner, discussing business. When suddenly he asked me if I had ever played Synchronicity. No, I said naively, I hadn’t…thinking it was a board or card game. But then I realized he didn’t mean that at all. He meant had  I ever played with synchronicity. Like throwing a question to the universe and waiting to see what happens. In fact I had, I told him. At one time, I was struggling to write my book. I remember looking upwards to the sky in desperation begging to know if I should write it. Months later, on my way for a coffee stop, a car cut in front of me. With the license plate WRITEIT. And so I did. I wrote it.

Because of our discussion, I was inpsired to “play synchronicity” again. He told me to put another question to the universe and wait patiently for the signs around me. So I did. And in the same rotary that I must take for my daily coffee stop, it happened again. A car with a license plate in front of me caught my attention. This time, it read YRULOST. I took that to mean that I needn’t be troubled by what had been troubling me. I wasn’t lost after all. Dr. Horowitz had delighted in this when I had told him of it, and now all my fellow “scouts” reveled.

Gasps and applause from the circle brought me back to the moment. The night had already felt so synchronous with songs and spiritual awakenings and now sharing my stories of “the synchronicity game”only heightened my sense that I was connected to the universe and at that very moment, to no place stronger than that circle. We were all feeling a sense of connection. Which would be sealed for all of us in the closing gestures of Dr. Horowitz and Lee…

….A Tibetan blessing. One by one, as she made her way around the circle, Lee placed both hands gently atop our heads as they chanted softly, and blessed us. Each and every one.

What we experienced that night, as lyme patients and advocates, was the best form of medicine and healing that any of us could have ever asked for: Unconditional love and acceptance, and unselfish giving. That is the true healing power of Dr. Horowitz. He healed a part of all of us that night with his gifts. Not the gift of triple persister protocols. But the gift of  his spirituality  and essence, allowing us to find inner peace and to let go of our fears, admist songs, stories and blessings. At least for a little while. As we sat in our synchronous circle. It would be the single most powerful experience at Kripalu, and the year, that I would have.

 

horowitzkripalu

 

 

 

 

This is a poem I wrote for the mom’s in my town after we made national news on December 21st when all 17 public schools were closed due to “threats of violence”. Be strong in this world. That’s the message. Whatever your struggle, be strong in this world–from Borrelia to bomb threats–let there be goodness and light.

“The Tears of Moms”

A rainy day
After yesterday’s fray
They’re the Tears of Mom’s
Washing darkness away.

Loving words
To dull evil’s swords
They’re the words of Mom’s
In a frightful world.

Tight hugs and embraces
Freezing in our minds our children’s faces
It’s the strength of Mom’s
Weakening the world’s disgraces

Sending them out the door
When no place seems safe anymore
It’s the harshest reality for Mom’s
To always fear what’s in store

But where would light shine?
If we sheltered and denied
This world from their hearts and minds?
Beautiful, innocent, hopeful and great—
It is their good that will beat hate.

A rainy day
After yesterday’s fray
The tears of Moms
Washing darkness away.

Kripalu: “Casting a Wider Net”

After Friday, our first night at Kripalu (Kripalu: “Closing in on the 8%), we were certainly better educated on the Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) questionnaire and the Lyme-MSIDS 16 point diagnostic map.

We had received handouts of the Lyme MSIDS questionnaire, a way of assessing and scoring one’s likelihood of having a tick-borne illness. That same information can be found here: http://www.eomega.org/article/is-it-lyme-disease

While the questionnaire is used to determine likelihood of tick-borne illness,  the 16-point diagnostic map shown in the below video is used to actually hammer away at the effects of the tick borne disease or the exacerbation of underlying issues, both of which determine ones ability to overcome tick borne infections. The factors that need to be addressed as part of the 16-point diagnostic map include 1. Infection (bacteria, virus, candida, parasites) 2. immune dysfunction (ANA. HLA-DR4) 3. inflammation IL-6, IL-1, TNF-alpha which cause “sickness syndrome” 4. Toxicity (heavy metals, molds, toxins) 5. Allergies (food, drug, environmental) 6. Nutrient and enzyme deficiencies 7. Mitochondrial, 8. Neurological, 9. Psychological disorders 10. Endocrine imbalance (low hormones including estrogen, testosterone, adrenal, thyroid) 11. Sleep disorders 12. Autonomic Nervous System dysfunction including POTS–postural orthostatic tachycardia syndrome–or bladder problems 13. G.I. disorders (dysbiosis, parasites, IBD) 14. Elevated LFTs (liver function tests) 15. Pain Syndromes and 16. Deconditioning.

Both the Lyme-MSIDS questionnaire and the Lyme MSIDS 16-point diagnostic map are great tools for the practitioner and patient. In fact, Dr. Horowitz encourages patients to be proactive and bring these kinds of tools back to their doctors, all of which is covered in his book “Why Can’t I Get Better?  

See following video (not taken at Kripalu) that reveals the 16-point map and what needs to be addressed in order to achieve recovery:

 

By Saturday morning, I was ready to immerse in a practice quite unfamiliar to me and out of my comfort zone: yoga. Gentle Yoga began at 6 a.m. My eyes burned from my pal and roomie Dana and I gabbing and giggling until 12:30 a.m (good thing we were located in the annex) and my head ached from not having immediate access to coffee. But the dimmed lights, background chimes and chants, slow/deliberate/strong stretches, and soothing instruction were exactly what I had craved, envisioned, and expected in a Kripalu experience.

At 9 a.m. we headed once again to the Sunset Room of the main building where Lee and Dr. Horowitz lead a brief guided meditation before beginning the 3 hr presentation that continued our education on Lyme MSIDS.

The conversation and presentation continued, cruised, curved, carried on, and even confused. So much information, so complicated yet critical. What follows are sound bites from Dr. Richard Horowitz as part of a memorable morning (as best and accurately as I can reflect and paraphrase them):

  • Pay attention to what sounds like YOU on the MSIDS map…that’s what you need to fine tune.
  • Lyme Navigator is an app being developed by my team that will allow docs and patients to apply the Lyme MSIDS questionnaire and map.
  • We need to cast out a wider net when it comes to Lyme…do routine blood work and tick born disease but also viruses, candida, fungi, mold.
  • Galaxy Labs is my go to for Bartonella testing. LabCorp and/or IgeneX for Babesia. IgeneX for Borellia. Imugen Labs is new and may be able to test for more species of borrelia, such as borrelia hermsii (relapsing fever).
  • IgeneX has passed the 95% proficiency test. The sensitivity of an ELISA test is 56%. Essentially a coin flip. In fact, an ELISA can miss up to 81% of cases, especially for those that did not have an EM rash. That’s little known information, available only because of a request based on the made as a result of the Freedom of Information Act.
  • Spirotest is a new test that will allow evaluation of inflammatory mediators, including cytokines CXCL9, CXCL10 and CXCL19 in order to determine your cytokine signature.
  • People with elevated levels of IL-1, IL-6, TNF-alpha and nitric oxide are typically the ones that exhibit ‘sickness syndrome.’
  • You have to pay attention to food allergies, which can lead some to experience writhing pain. You might need to avoid foods that cause a histamine response, including fermented foods like kimchi as well as aged cheese, alcohol, citrus, chocolate and smoked foods. I have this problem…they call me “Itchy Ritchy”.
  • I often test vitamin D levels in my practice. Both the 1-25 form (made in kidney) and 25 OH form (made in liver). A ratio of 1-25:25-OH > 2 is indicative of inflammation.
  • 25% of patients in my practice are deficient of minerals, like magnesium.
  • 25% of patients I see have low glutathione levels.
  • 10% of patients I see are low or missing immunoglobulins, such as IgA, M or G.
  • Intravenous immunoglobulin therapy is approved for individuals with immunoglobulin deficiency.
  • Any ONE or TWO of the following bands should be considered indicative of Lyme: 23, 31, 34, 39, 83-93. 41 is not because other spiral shaped bacteria may make this show as positive, such as certain mouth bacteria.”
  • In Beijing, I have treated babesia with mepron and dapsone.
  • CD57 cannot be used as a reliable marker.
  • People often say studies don’t exist that show that Lyme persists…I can name 6. Then 5 more. And 5 more. And 6 more after that. And two more after that. It’s science vs. politics.
  • NF-kappa B is like an interleukin ON switch in the cell nucleus. You need to turn it off. With things like glutamine, alpha lipoic acid and antioxidants. When you turn this switch off, resistant symptoms can get better.
  • Plaquenil is contraindicated for people with psoriasis.
  • I use 3-4 different probiotics at the same time. UltraFlora. Saccharomyces boulardii. And VSL. This provides high-dose and varied support.
  • My best advice for pushing through a herx: 1. Alkalize the body. Use lemons and limes (sounds counter intuitive but is not) or AlkaSeltzer Gold (not the regular one which has aluminum, the GOLD) 2. Essential Pro Liposomal glutathione–take 8 softgels a day (2,000 mg) with AlkaSeltzer Gold. Within a few hrs, symptoms should die down. If not, repeat. 3. Add Smilax (sarsparilla) 30 drops x4 per day for extra support. If needed you can also consider toxin binders like charcoal or bentonite clay (hours away from a supplement or meal). If possible, addding low dose naltrexone (LDN). If none of this works, take a break from all of it for a day and restart or rotate some of it back in.
  • If someone continues to herx on intracellular antibiotic drugs, I did what I swore I would never do–after watching my doctor stepdad Harris do it–I give intramuscular shots of Bicillin. This is extremely effective for my sickest patients. If i.m. fails, then that’s when I consider i.v. but I don’t actually do much i.v. in my office.
  • I advise some of my patients to take probiotic enemas. I use a product called Probiomax to put in the enema. It’s basically making sure to get probiotics in both directions! Bifidum bacteria work best.
  • I often get asked what to do with patients who can’t tolerate their antibiotics.  I typically advise pulse protocols to get around the gut intolerance. For instance taking intracellular probiotics every other day. And considering dapsone as well, which has no effect on the gut or flora. However, dapsone can cause severe anemia in patients may need high dose folic acid.
  • New biofilm busters alert! 1. PRMSE which stands for Phenolic Rich Mape Syrup Extract 2. cinnamon and peppermint 3. Stevia (whole leaf extract) 4. Pomegranate (high in ellagic acid)…imagine a “candy manufacturer” that can combine all of this…it would be like creating a  life saver candy…literally a Lyme Life Saver!
  • My “persister protocols” consist of various combinations of triple intracellular antibiotics (like doxy/rifampin/dapsone) pulsed with a cellular antibiotic.
  • Some of the drugs with highest anti persister activity includes daptomycin, clofazimine, carbomycin, sulfa drugs, cefoperazone.”
  • The Cowden protocol works and can help hold you stable, and includes Banderol, Samento and Cumanda.
  • Silver is not adequate and I have concerns about it’s long term effects.
  • Liposomal artemesia works better.
  • For viruses, I use 3,6 beta glucans, Transfer Factor, Mushrooms and olive leaf extract.
  • For candida, I use grapefruit seed extract (also works against cystic forms of lyme when combined with plaquenil), nystatin, caprylic, oregano, garlic, berberine).
  • LDN (low dose naltrexone) takes down inflammation and blocks IL-6, IL-12, TNF-alpha. I typically recommend 2mg for 1month, 3 mg for next month, then 4.5 mg.
  • Nrf-2 is activated when our bodies are under alot of oxidative stress. Foods and supplements can activate Nrf-2 in the cells of our bodies to provide antioxidant defense, including broccoli seed extract (2000 mg), resveratrol, green tea and curcumin  (2-8 grams per day, preferably with bioperine).
  • Follow a mediterranean diet as much as possible, and avoid sugar, gluten and dairy.
  • When it comes to detox, increase the amount of protein and cruciferous vegetables in your diet and add NAC (n-aceytl-cysteine), ALA (alpha lipoic acid), glutathione, magnesium, DIM (di-indolylmethane), and sulfurophane. I personally take DIM and sulfurophane every day because of a family history of cancer.
  • When it comes to oral or i.v. glutathione, liposomal oral glutathione will usually work just fine in high doses.
  • Tell tale signs of Erlichia is leukopenia (low white blood cell) and thrombocytopenia (low red blood cell) and sometimes elevated liver enzymes. Antibiotics used include tetracyclines (like doxycycline) and rifampin.
  • Borrelia hermsii can be manifest with petechia (affecting skin), Morgellon’s disease, vasculitis, granulomas.

 

And that is where we left off the for day. From all that we learned, it seemed obvious that the best advice overall was to “cast a wider net”. From identifying all infections as much as possible; to expanding treatment to potentially include not 1, not 2, but 3 intracellular antibiotics and adding pulsed cellular antibiotics if necessary; to embracing a wide array of supplement and herb options; to identifying food triggers, from allergens to histamine inducers; to expanding our knowledge of natural and “breaking news” new biofilm busters; and to triaging herx solutions all while broadening our overall approach with the 16-point diagnostic map. The best advice of all that I can provide to you in this moment? To get Dr. Horowitz’s book ‘Why Can’t I Get Better’ or find his lectures on youtube to use as a reference for most of the above. Then perhaps together we can slowly tame Lyme-MSIDS…with our wide casting nets.

Richard Horowitz, MD, and his wife, the lovely Lee, kicked off the weekend conference “Beyond Lyme & Other Chronic Illnesses: Reclaiming Your Health and Well-Being,” on the evening of Friday, December 4th. It was “healing with the Horowitz’s” at it’s finest.

We huddled eagerly–my girlfriend Dana and I among fifty or so professionals and patients–in the Sunset Room at the world renowned Kripalu Center for Yoga & Health, founded on the teachings and principles of Swami Kripalu, for a weekend of  both retreat and research.

That evening, Dr. Horowitz and Lee established the foundation for the next few days, including first grounding us all in meditation and blessings from their years studying Tibetan Buddhism. It was science meets spiritualism in scenic and secluded Stockbridge, MA.

Second that evening, they established Hope. Dr. Horowitz and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. Horowitz explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. Horowitz whispered.

It works like this. Dr. Horowitz first combines 2-3 intracellular antibiotics to reach the persister bacteria hiding in cells. This would be the “triple persister” cocktail. Then he pulses with a cellular antibiotic. This pulsing has been shown to be effective based on the incredible work of professor and researcher Kim Lewis of Northeastern University. Dr. Horowitz has found this regimen to be very successful for people who continue to have symptoms or relapses. BUT FURTHERMORE, he has now found with  the help of the work from Dr. Zhang that adding dapsone (pyrazinamide) to this regimen for the most difficult of cases…could be THE key to perishing the persisters for once and for all. Dapsone being that potential mycobacterium super drug used against Tuberculosis and leprosy.

Dapsone, or prazinamide, targets tuberculosis bacteria that have become “persisters,” which don’t respond to typical antibiotics. Zhang and Horowitz’s hunch that this will also work to combat “persister” bacteria associated with lyme and co-infections…has been promising. Very promising. And it is likely that Dr. Horowitz will publish work being conducted on his patients in the upcoming year. For more on the work being conducted by Dr. Kim Lewis and Dr. Zhang, read here:

Dr. Lewis:

http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

Dr. Zhang:

http://beforeitsnews.com/health/2015/10/lyme-disease-persister-drugs-dr-ying-zhang-2593390.html

http://magazine.jhsph.edu/2013/fall/news-briefs/two-takes-on-lyme/

http://www.jhsph.edu/news/news-releases/2014/new-test-shows-promise-in-identifying-new-drugs%20to-treat-lyme-disease.html

Remember, however, that based on Dr. Horowitz’s own experience, about “92%” can get better with the approach of “hitting all targets” and combining antibiotics that work on the spirochete, cell-wall deficient (or “L-form”) and cyst forms of Borrelia. To help understand what that means, the first link below provides a table comparing Borrelia’s multiple forms, and the second link below provides a helpful overview regarding which antibiotics target which different forms.

Overview of different forms of Borrelia:

http://www.lymebook.com/top10forms

Overview of antibiotics that attack different forms:

http://www.treatlyme.net/treat-lyme-book/kills-lyme-germs-a-brief-antibiotic-guide

AND specific examples of some of Dr. Horowitz’s favorite combinations for attacking the various forms of Lyme (as well as co-infections like bartonella and mycoplasma) are shown in the pictures below.

KripaluLyme

KripaluBartonella

Photo credits: My friend and kripalu roomie Dana

Third that evening,  they discussed the “How & Why” of so many becoming sick with Lyme and co-infections. 1) A decrease in the fox population, and an increase in the mice population. 2) Climate change: ticks are emerging at least 3 weeks early forcing legislators to consider making APRIL Lyme Awareness month, not May! 3) Migrating birds: It’s why the Lone Star tick is now an unwanted visitor found in the eastern U.S. (a lone star tick can detect body heat and carbon dioxide from 15 feet away and will actively and aggressively move towards the source!) 4) It is now known that infected tick mothers pass infections, such as Borellia miyamotoi, to their offspring 5) Blood transfusions (4 out of 1,000 blood transfusions are now believed to transmit babesia), sexual transmission and maternal transmission to a fetus 6) Constant discovery of new borrelia species in addition to new co-infections 7) Continued lack of a gold standard for diagnostics and diagnostics that can adequately detect over 300 borrelia species world wide (and that can do so within the first 30 days of infection) 8) The reality of persisters, bacteria that persist despite antibiotic treatment and 9) Healthcare politics.

And lastly, Dr. Horowitz discussed what lay on the Horizon. The world, he explained, has included Lyme in a list of emerging pandemic disease, joining the likes of Ebola, West Nile and Dengue. All a threat to global health and world economics. Surely with this type of “recognition” will come a sense of urgency and a plan for action. Optimistically, Dr. Horowitz explains that he already feels that little by little, things are starting to “shift” in the diagnostics world. There is a new or soon to be new “C6 Elisa Test” that picks up more strains of Borrelia than current Elisas.  Regarding the Western blot, more and more are starting to realize that that just having ONE band is enough for a clinical diagnosis of Lyme disease, if other diseases have been ruled out. And the last shift that needs to be made, he indicates, is evolution of the PCR test to address additional strains of Borrelia, especially the strains that make people the most sick.

It was both enlightening and exhausting to be exposed to all of this information in our first evening at the Kripalu conference. Dana and I headed to our 9 p.m. massages. Our minds were ready for deep relaxation and deep reflection after all that we had heard. Our bodies were ready for the nurturing of healing touch. And we wondered where our dreams would take us, as we realized the irony of the fearful questions and curiosities swirling in our heads against the calmness of Kripalu and the confidence with which Dr. Horowitz spoke of the future.

DISCLAIMER: Lymewhisper makes every effort to accurately take and reflect notes, but makes no guarantee that information was perfectly captured or understood (which would be a feat even for someone without lyme brain) For that reason, I want to point you to Dr. Horowitz’s website where you can find out more about his book which has ALL the info you need at www.cangetbetter.com.

 

 

 

#FindingJoieDeVivre #DespiteTheHolidays, that’s the goal. The busiest, most stressful time of year–the holidays–is physically and mentally exhausting. In fact, the  hustle and bustle is downright #Cruel #Punishing #NotFair #Unnecessary. Which is why I’ve decided to find joy in every day, in the small, simple, peaceful, quiet, noncommercial pleasures. Finding jollity amidst the chaos is not easy, but I share with you 15 small gifts I’ve been finding in each day to keep joy in my heart and Borrelia at bay.

  1. PBS. Yes, PBS. There’s something about nature, music and Masterpiece Theater that calms the nerves and feeds the soul.
  2. Independent Radio. Avoiding Christmas and Pop music and enjoying new artists and songs has been…refreshing and rewarding.
  3. Cream and cinnamon. In my coffee. Normally I avoid them, as I have a mild allergy to both. But a cheat day, oh what a treat!
  4. Mediterra Bars. Mmmmm savory Sundried Tomato & Basil or Black Olive and Walnut meal/snack bars. I know right?
  5. Zumba 20-Minute Express. Nothing like a little Cumbia after my morning coffee to get the blood and endorphins flowing.
  6. Religious Workout Music. Hilarious, right? Who does that? I do, when I need it. “You Raise Me Up.” “Amazing Grace.” “Let There Be Peace On Earth.”
  7. My new 8:22 bedtime. Because I’m tired and listening to my body. Because I love my fleece sheets…and snuggling with my 8 year old.
  8. Online shopping. Because malls are energy sucking time draining misadventures. And it’s just too early for xmas music.
  9. Low-sodium chicken broth. Unlike “regular” broth, it agrees with me and begs for kale, brussel sprouts, beans, sausage and quinoa pasta.
  10. Sips of Red Wine. Not 6 oz. Sips. Just a sip or two while cooking. To enjoy the art of wine and food without making myself ill.
  11. Spending Time With Customers. Gives me a rush and a high. Love talking with my customers. Hate working at my desk.
  12. Escaping in My Minivan. It’s like my mobile mommy cave. A place all my own. Where I can drink my coffee and listen to the radio and be alone with my thoughts.
  13. Time With My Hockey Family. Because ice is thicker than blood when you don’t have family around. And hockey families are just…different.
  14. Dark Chocolate & Pistachios. Because no day is complete without them. Wherever I travel, so do they.
  15. Bonjour Happiness. It’s the new book I’m reading and the inspiration behind this list. By Jamie Cat Callan. About how French women find their Joie De Vivre…in the simple things…from a beautiful scarf, to dinner parties.

#FindingJoieDeVivre #DespiteTheHolidays. It’s not easy, but we can find it, if we try. And let the French, as they did in Jamie Cat Callan’s book “Bonjour Happiness”, be an inspiration to us all. After all, just 2 days after the Paris attacks, the French were raising their wine glasses at the Beaujolais Nouveau wine festival in an act of defiance…and to reclaim their Joie De Vivre. This holiday season, I will have those families in my heart and mind and enjoy spending time with loved ones, the greatest Joie De Vivre for us all.

joievivre

From the Board Room to Borrelia

I could predict this was going to happen faster than I could predict my third quarter results… But first…

...Bacon-wrapped scallops. With The Board of Directors. Comprised of highest level executives from around the country and internationally. There would be wine and prime rib. Small talk about families and summers. Big talk about industry and trends. And a long, late night commute home. And then the next day…

The board presentation. For almost two months, I had been working in overdrive to create and deliver a most winning presentation about what my brand stands for. It’s history, vision, strategies, performance and legacy…told as a story unfolding before them. I had gotten tips on how to create an unforgettable presentation from reading about the best of TED Talks. And now an intimidating board was captivated. My adrenaline fueled my passion. My passion fueled more adrenaline. Future investments in my company and in me were all at stake.  I put my hand over my heart as I made my closing remarks, for love of my brand and the difference we make in people’s lives. The room erupted with “wows” and “wonderfuls.” I had delivered.

I thought about the months leading up to that day, that moment. Weeks of late night obsessing and fine tuning and editing and formatting. Only to awaken in the wee hours of the morning to obsess and fine tune some more, leaving myself with little more than five hours of sleep. Followed by hours upon hours of rehearsing. In front of the mirror, in the shower, in the car. I was elated and exhausted. But it had all been worth it.  And did I mention it was…

Back-to-School Week. A middle schooler starting at a new school, with soccer tryouts to boot. What time did school end? What time was soccer practice and where? Could he take the heat? Would I be there to pick him up on time? Would he take the bus home? How would he get in touch with me? What about his sister? Would she like her third grade teacher? Would I pick her up at her school before her brother or after? Should I sign her up for cross country? Too many questions I couldn’t answer and  too many worries I couldn’t silence in my head. But it all worked out, and we had much to celebrate between the board presentation and surviving the first week of classes so we headed to New York…

.For a broadway show. Mamma Mia,  in one of it’s final showings. The voices were brilliant, the people beautiful and the platform boots and bodacious dancing did not disappoint. Nor did the hours we spent walking around Rockefeller Center and Times Square, exploring some of the largest Toys R Us and M&M stores in the world. It was another late night and another early morning making our way back to Penn Station. On the four hour train ride home, the kids played video games  while I took out my iPad Mini and started to work on my…

Business Plan and Budget for 2016. After all the effort and stress that had gone into the board meeting, I could barely believe the cruel reality of now having to gear up for the intense and blood pressure spiking season known as Business Planning and Budgeting–an exhaustive though crucial exercise in strategic planning and number crunching for next year’s plan. Back to staying up too late and  getting up too early working away. And refusing to give up my 5am workouts despite it all. Which is why beyond a shadow of a doubt I was about to come face to face with…

Borrelia. It started with”stars” in the corner of my left eye, making my peripheral vision fuzzy. I looked at the clock on my car’s dashboard and couldn’t see all the numbers. I looked at the speedometer and could not see the left half. At the same time, the rain was pounding on the windshield and sliding down like angry, squiggling worms. I just wanted it to stop and felt like I was being attacked.  I opened the driver’s side window and looked in the side rear view mirror, which was not being pelted by the rain, and felt a short burst of relief and comfort. But the fuzzies and stars were closing in and I was fighting to keep from going dark all together. Not to mention fighting to keep control of my car on the highway.

As I often do when I start to panic, I reached for something to eat or drink. For some reason, I think it will help me to “come to” and “snap out of it.” I frantically reached for the Go Raw pumpkin seed bar  in my lap top bag and the can of open day-old flat seltzer water in the caddy. I took a bite and chewed and chewed and chewed. The food wasn’t going anywhere. It was just a glob in my mouth. Why wasn’t it going down? I don’t remember throwing the wrapper on the floor. Or the can. I do remember slapping my leg. Hard. Over and over again. Saying No! No! No! “No!” I always think “This will NOT happen to my kids! I will not let whatever is happening take over me. I WILL be home tonite and I WILL be fine!” I turned the radio as loud as I could. I don’t know why. Another way to try to pull myself “back in”. I am a very defiant person and when I’m trapped in these moments I often just think if I ignore what’s happening it will go away. So I started to just sing along to the blaring music. And look out the side view mirror, and hit myself. And say no no no. And finally by the grace of God, I pulled out of it. The strike of an attack so forceful that I felt as if I had been excised from weeks and months of stored up, evil panic. I was exhausted, weak and shaken…

But was I really surprised? No. I knew something was going to give. The stress of the board meetings. The toll mentally and physically of work, workouts, school and play in those last few weeks and months. I know I push myself to the limit. I know I do. But I guess I’d rather push myself to the limit than feel that I’m being limited by Borrelia. Would I go back and not work so hard on my board presentation? Not attend the work dinners? Not be there for my kids practices and games? Pass up the chance to see Mamma Mia live on Broadway? Nope. I’d do it all over again. That’s the choice I make, for right or for wrong. To push myself to the limit and experience all that I can, despite Borrelia watching my every move. And waiting. Waiting to make hers. Like this week. When sensory and neurological overload and fatigue opened the door to a suffocating panic attack, with Borrelia as the master board room director behind it all however…

…Bend I may, but break I will not, Borrelia. I will go back to the board room. You can go back to the drawing board. Because I’m still the director of me.

If only boardrooms were this

If only boardrooms were this “peaceful” and “serene”!

Dear Discovery Channel:

Don’t get me wrong. I do love Shark Week. This year’s series from July 6th-10th was no different. The build-up. Intensity. Fearful excitement. All part of a cult-like annual rite of summer.

Bill Gates decided to declare that same week Mosquito Week. He was was quoted as saying, “Considering their impact, you might expect mosquitoes to get more attention than they do. Sharks kill fewer than a dozen people every year in the U.S. and they get a week dedicated to them on TV”…referring of course to Shark Week. Malaria from mosquito bites is responsible for 600,000 deaths per year. But there is not show for this.

Which got me to wondering, Discovery Channel. Would you consider…”Spirochete Week”?There is no show for this, either. I wonder how it would even be categorized? Documentary? Murder Mystery? Medical Mystery? Drama? Political debate? Crime series? All of the above?

I get what Mr. Gates is saying. The incidence of shark attacks world-wide is 75 each year. The incidence of Lyme Disease caused by tick attacks? Estimated to be somewhere between 300,000 to 1.5 million each year.

Perhaps, Discovery Channel, some similarities between Shark Week and Spirochete Week would help convince you that it is worth covering:

Shark Week: Shark week is an annual, week-long programming block which features shark-based programming, criticized in recent years for mixing fictional with real accounts.

Spirochete Week: Lyme Disease is an annual mental block for scientists that struggle to discover anything about the disease at all, and charge that patients accounts are more fiction than fact.

Shark Week: Originally premiered on July 17, 1988.

Spirochete Week: In 1982, the name Borrelia “Burgdorferi” premiered, when the spirochete was named after the scientist Willy Burgdorfer, who found the connection between deer ticks and Lyme disease.

Shark Week: Held annually, normally in July or August, it was created to raise awareness and respect for sharks. It literally became a monster hit.

Spirochete Week: Borrelia is very popular in July or August ,when tick populations are in great abundance, as are individuals enjoying outdoor activities. Many people are hit with the disease during this time.

Shark Week: Since 2010, it has been the longest-running cable television event in history. It is broadcast in over 72 countries and is heavily promoted on Facebook and Twitter.

Spirochete Week: Since 2010, the number of confirmed and probable cases has continued to rise. Lyme disease is now in 80+ countries worldwide and people’s desperate plights are increasingly being shared via Facebook and Twitter.

Shark Week: Shark bites can cause severe muscle pain, joint paint, loss of use of limbs, or loss of life.

Spirochete Week: Tick bites can cause severe muscle pain, joint paint,  loss of use of limbs, or loss of life.

Shark Week: Sharks live in the deep oceans.

Spirochete Week: Spirochetes live deep in tissues.

Shark Week: There are over 500 species of sharks.

Spirochete Week: There are over 300 species of Borrelia.

Shark Week: Most feared culprits are Great white, tiger, and bull sharks.

Spirochete Week: Most feared culprits are Borrellia, bartonella, and babesia.

In fact, I will even propose the following titles for episodes, based on current Shark Week titles, to make your job even easier:

     Monday: Instead of “Return of the Great White Serial Killer” how about “Return of the Great White Spiral Killer?”

     Tuesday: Instead of “Bride of Jaws” how about  “Bride of Jaw Pain?”

     Wednesday: Instead of “Ninja Sharks” how about “Ninja Spirochetes?”

     Thursday: Instead of “Super Predator” how about….oh just keep “Super Predator”

     Friday: Instead of “Sharks of the Shadowland” how about “Ticks of the Meadowland?”

I hope, Discovery Channel, that I have made a strong case for future coverage of Spirochete Week. And Mr. Gates, any contribution, financial or otherwise, you’d like to make to the cause would be much appreciated.

Sincerely,

Lyme Whisperer

shark-week