Tag Archive: Tick


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

 

 

 

 

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

English: "The Barnum & Bailey greatest sh...

English: “The Barnum & Bailey greatest show on earth Wonderful performing geese, roosters and musical donkey”. Chromolithograph. Français : Affiche originale pour le cirque Barnum obtenue par chromolithographie vers 1900. Traduction du texte “Barnum & Bailey, le plus grand spectacle sur terre. Ses merveilleuses oies et coqs dressées, son âne musicien. (Photo credit: Wikipedia)

Funny, Borrelia. I was JUST lamenting tonight about how my hectic work schedule, being the business planning and budgeting time of year, was keeping me from blogging more frequently about another day in the life of lyme. Have also been feeling uncreative, uninspired. And not feeling very spontaneous with my writing. Too tired for any of it. And then, the phone rings!…

…It’s my girlfriend. One of my closest and craziest friends. Giving me an update on a development that she made an urgent phone call to me about Monday morning at work. I will give her the alias of UnCrazyLady. I know that sounds strange given how I just described her as one of my craziest friends, but you’ll understand why that’s the alias I give her shortly, Borrelia.

The development was this. Her husband, also one of my dearest friends, discovered a tick embedded in his leg. After removing it, not quite intact, UnCrazyLady starts to feel the panic set in. Why shouldn’t she? She’s been reading my blog for months! Posts like Mindfreak! And Dear Borrelia! And The Mad Bladder! And Note to Self! All about life with lyme. That’s enough to give ME a panic attack! And I wrote it. And live it! And her husband provides the household income. What if he goes down, she’s thinking? Because of the physical or mental effects of lyme, if infected. Physically because of the pain or symptoms, or mentally because of the relentless of the disease?

His alias will be InItToWinIt. Why? He’s not panic attacking. He’s a Whole Foods, organic eating, raw cooking, exercising powerhouse. He’s strong, fit, lean, and extremely health conscious. He’s confident in his health and his body and has good faith that he is in great fighting form. I completely agree. If Borrelia, he has been exposed to you, he will be more than a worthy opponent.

UnCrazyLady called me for some quick advice. They were going to contact his primary care physician, and wanted any ideas on how to approach the visit and concerns. I indicated that most likely they would give him one dose of doxycycline. They did. I suggested that she push for at least a 30 day dose. And in the meantime research lyme literate experts in the area to consult with after that. She did push. He was not given the 30 day dose of doxycycline–she was told the one day dose was the CDC protocol. She then  rather heatedly commented that she does not necessarily have faith and confidence in many matters where the government is concerned. Only she did not use the words faith and confidence 🙂 The doctor told her he was not going to presribe the 30 day dose just to “treat” her anxiety. And looked at her like she was crazy. And that InItToWinIt was crazy for marrying her (according to her keen observation of the docs body language)….

…WHOA buddy. I can think that my dear friend is crazy. For reasons deserving of a completely separate blog. But YOU cannot, I repeat cannot, think my friend is crazy when it comes to this!!! Therefore. Out of spite, and sticking up for my friend, her alias for the purpose of this post is UnCrazyLady. Get it now, Borrelia??

Feeling somewhat defeated, she asked whether or not the tick could be sent for testing. The doc said no, that costs $600. She called Quest, they told her it costs $198. I told her to call IgeneX. Can’t remember if they test ticks or just blood, so I figured she should check and see. The doc also said not to worry, there is no bulls eye. Or flu like symptoms. But to come back if he does come down with flu like symptoms. Because those are really the only indications of infection. Oh REALLY? No, UnCrazyLady, I insisted. Be aware, be conscious of subtle–hopefully not severe–changes. Eye twitches. Feet falling asleep. Recurrent sinus infections. Headaches. Note anything new or anything happening more often that it used to. Don’t listen, I told her, to any medical professional who, if it existed, sound like they just read The Idiots Guide to IDSA Guidelines.

Meanwhile, UnCrazyLady told me she had contacted lyme specialists at Mass General and Tufts and awaits to hear back from them. But not without a referral from her primary doc first. Oh brother. Welcome, I said. Welcome to the circus. The fight for information and access and help and resources and guidance and answers. The Ringling Brothers and Barnum&Borrelia  circus!!!  Sorry you have  a ringside seat now, UnCrazyLady. Really am. Also for some reason I have the song in my head from the children’s movie Madagascar 3 “Circus Afro” sung by Marty the Zebra. Because the lyme experience, even when just trying to get initial doctor understanding and support and answers after a tick bite, is such a frustrating circus. Then again, as UnCrazyLady and I chatted UnCrazyLady to UnCrazy Lady, we agreed this is a lyme thing, but also an american healthcare thing! A circus. All of it. Take it away, Marty:

Look out, Borrelia. UnCrazyLady–she’s a spirited, feisty, all or nothing fighter. That includes patient advocacy. She will make a circus out of YOU! She will track down the people and answers she needs. I will be learning from HER. In no time at all. That’s how she rolls.

It is a hard position to be in, we agreed. We both do have a certain level of understanding that not every single tick bite can be treated as it it will be the first and last. Can it? We get not necessarily getting an extended course of treatment everytime. My neighbor for instance has had 3 tick bites in the last few weeks alone! Does every incident require the full 30 day (and then some) treatment? Sometimes I wonder, how can it? We live in the northeast. This is our reality.  The moment we set foot outside, we know it could happen. Same for all the followers of this blog, so many from the same states. Pennsylvania. Florida. California. Michigan. This is your reality too. Even when my own child had a tick, I didn’t have him tested right away. It was the beginning of the summer. He could go through the summer with one bite. Or one hundred. I waited. For signs. And at the first one, acted. There’s no right or wrong. These are difficult decisions we face or will face, and so will our neighbors, friends and family. But its the attitude of many in the medical profession. The lack of compassion. The lack of understanding the fear and anxiety and uncertainty. The inability to offer much beyond “this is what the CDC says” that is frustrating and feels like a road block.

InItToWinIt takes his one dose of doxycycline tomorrow. Thinking of you friend. Sorry you are both an act in this circus now.  Someday the tables will be turned. We will make a circus of the unsupportive medical profession. We will make a circus of Borrelia. I swear we will and I believe it. Awareness and Advocacy will be the key. With UnCrazyLady in the game now, Borrelia, our ability to make others aware and to be effective advocates  just got better!!!

Leapin’ Lizards!

Western Fence Lizard

Western Fence Lizard (Photo credit: Wikipedia)

“Leapin’ Lizards” and “It’s a Hard Knock Life”, Borrelia. That’s what little orphan annie said.

Leapin Lizards, on August 8th I shared a link on my face book page about how UC Berkeley scientists had revealed that ticks that feed on the blood of the western fence lizard in California showed no signs afterwards of infection from you, Borrelia!! AMAZING. A-MAZING. Something in the blood of the western fence lizard, when sucked in by the the little tickie-poos, was able to kill you off and render the tick devoid of you!! Meaning the tick was no longer an infection risk to humans. What?!? Who is at the root of this great work? And what does this mean in the fight against lyme disease? Debi Seibert and Lynne Grayson (lyme whisperer followers on facebook), hope you enjoy this update!

Western Fence Lizard (Sceloporus occidentalis)

Western Fence Lizard (Sceloporus occidentalis) (Photo credit: Larry Meade)

Well, for starters, Dr. Robert Lane of UC Berkely has a series of published work on this effect of the western fence lizard dating back to 1989. In Dr. Lane’s 1989 study, your spirochetes, Borrelia,  were not found in the blood of 261 wild-caught lizards, including  lizards fed upon by infected ticks at the time of collection. In the 1990 study, Dr. Lane attempted to infect the western fence lizard with you, Borrelia, and was unsuccesfful. In the 1992 study, 0 of 223 tick larvae and 2 of 330 nymphs (0.6%) that had fed on the western fence lizard contained your little spirochete presence,  Borrelia. And, spirochetes were NOT found in the blood of lizards examined. These results are only a partial summary, but they are impressive!!

What does all this point to Borrelia?? That there is a Borreliacidal factor in the blood of the western fence lizard! Borrerliacidal…don’t you loooove that term?! I DO. As concluded in a 1998 study by Dr. Lane, “We conclude that the blood of S. occidentalis contains a thermolabile, borreliacidal factor, probably a protein, that destroys spirochetes in the midgut diverticula of feeding I. pacificus (tick)  nymphs.”

A 2000 study shed some light on exactly that that protein in the western fence lizard blood may be by stating, “Proteins comprising the alternative complement pathway are responsible for the borreliacidal activity observed in the blood of S. occidentalis.” Any other biology majors out there? The Complement System is a part of the innate immune system that helps or “complements” the ability of antibodies and other immune cells to attack and clear harmful oganisms from the body. It  consists of a number of small proteins found in the blood, generally synthesized by the liver. These proteins typically circulate in inactive form until triggered.

Ironically–and Lynne Grayson you won’t like this–there is an eastern fence lizard but they do not show the same ability to rid ticks of Borrelia, according to a 2007 study, and therefore will not reduce the risk of lyme disease in certain geographical regions. 😦

Dr. Lane’s most recent works were published in 2011 and 2012. And after reading them, I had to wonder, as did my curious facebook followers after I posted my intial post on August 8th, were studies being conducted to isolate the protein from the western fence lizard and was anything being done to develop it commrecially? So that we would have a potential therapeutic agent against you someday Borrelia??! Well, why not ask the gentlemen behind it all? So, I emailed Dr. Lane at UC Berkeley! Oooh I felt almost as excited as Ralphie from A Christmas Story waiting for his orphan annie secret decoder ring in the mail. What would Dr. Lane say??

Unfortunately, this is where “It’s a Hard knock Life” comes in…Dr. Lane kindly responded by saying “Thank you for your interest in our lizard research.  Regrettably, we have nothing else new to report with respect to it since publication of our 2006 article demonstrating the refractoriness of the western fence lizard to Borrelia bissettii spirochetes. Again, thank you for contacting me, and keep up the good work.”

Well, Borrelia, seems like us lymies won’t have a lizard blood potion any time soon. Another knock for us. No vaccine. No magic pill. So disappointing that the western lizard may hold the key but nothing is being done–at least at the moment–to capitalize on this scientific discovery. As always, we can only hope for the time being. Leapin’ Lizards.

Debi, Lynne, and everyone else, I hope you are pleased with this update. And I am thankful for Dr. Lane for responding to my inquiry! And for all his research. Who knows, maybe something will be developed in the future based on all the important work he has done….