Tag Archive: Tick-borne disease


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

Katie Courage

Here’s the follow up to the Katie Courage, er, uh, Katie Couric show that just began covering the topic of chronic lyme. There is hope they will continue to do so based on all the comments and buzz and stories that keep rolling in (way to bite back lymies). Below is a link for Katie’s Follow Up Friday video as well as a link to the Q&A with Dr. Horowitz and Dr. Halperin.

For the video, click here:

http://katiecouric.com/videos/follow-up-friday-lyme-disease-surviving-evil-ll-cool-j/

For the Q&A, click here:

http://katiecouric.com/features/have-a-question-about-lyme-disease-ask-the-docs-here/

Let’s all continue to follow the developments through Katie Courage, er, uh, Couric, it seems like the show may continue to ask for our stories…share them!! 

Don’t whisper…scream from the mountaintops!! 🙂

 

 

 

She’s done it yet again. She’s inspired me to draw on powerful analogies to describe her epic fight against lyme disease. First, I described her as Aslan the Lion in The Lion, The Witch, and The Wardrobe from July 2012. Then, as Snow White in This Is Your Year, Snow White in January 2013. And now, how can I resist but to draw analogies from the Harry Potter series when on October 9th her chronic lyme story was aired…in an episode of the Katie Couric show called “Lyme, Disease, Daniel Radcliffe”. I mean, that’s almost too easy. But, no. No. It is not an analogy featuring Kelly as the brilliantly resilient Harry Potter and Lyme as the evil Voldemort, the darkest of dark wizards.  No….it’s not that. Come on. Hop on the Hogwarts Express with me. Let me tell you Kelly’s lyme disease story in my eyes. And it will soon become painfully clear why she shares the spirit of Hermione.

Like Hermione, she was born to “muggles”. Wonderful, salt of the earth “ordinary” hard-working, loving folk who supported her unconditionally. In time, she discovered she was a “witch” with special powers. In Kelly’s case, a kindred, god-loving, sweet spirit with the ability to spread light into the lives of others, including her family, friends and students. Hermione was sent to Hogwarts School of Witchcraft and Wizardry to utilize her gift, , while Kelly used hers as a wife, mom and teacher.

At Hogwarts, Hermione was “sorted” into Gryffindor, one of four groups the students were assigned to. Those belonging to Gryffindor were identified as being brave, courageous, determined, unintimidated and fearless. Kelly, you are most qualified for Gryffindor. You too are a Gryffindor girl, for these traits. Ironic isn’t it that the emblem for Gryffindor is a lion. Wouldn’t be the first time I compared you to a lion, now would it, Aslan? Thing is, Hermione did have one weakness. Flying. Now Kell. It’s been a while since you’ve been able to drive. For now, I would say that like Hermione you are not a good Quidditch candidate nor should you attempt the Nimbus 2000 anytime soon. But don’t you worry, soon you WILL win that world cup in the game of lyme and you’ll be able to do all the flying and driving your heart desires 🙂 And do you know how hard it is for me to spell Gryffindor so many consecutive times with my lyme brain and lyme fingers?!

Then Kelly’s life turned into a chapter from Harry Potter and the Chamber of Secrets.  In this second book in the series, a vicious, frightful,  dragon-like, snake-like ancient monster is released and begins to attack students in the halls of Hogwarts. Hermione is caught in it’s grotesque and powerful stare, petrifying her. Petrifying her. In a rock-like state. Like Kelly being stared down…and petrified…by the unsightly beast, Borrelia.  Starting first with her arms. Then weeks later, full body, stone cold…paralysis. Petrified? More like petrified. And how did Kelly overcome? Much like Hermione did. With the magic and compassion of her caretakers.  Image

Hermione, that heroine. She was the driving force behind the Dumbledore Army, a secret study group for the Defense against Dark Acts. She fought with her comrades including Harry, Ron, and her teachers,  in a series of battles including the Battle of Hogwarts that brought an end to the evil Voldemort in a fierce and ghastly struggle for all time. Like you Kelly. Leading with bravery our “secret society” Lyme With the Wind (or is it Gone With the Lyme?!) support group.  Taking us through our battles while fighting yours. Kelly, that heroine.  

If Kelly is Hermione in all of this, does that make Dr. Horowitz Harry Potter and the CDC Voldemort? Yeah. It kinda does. Maybe there is deeper meaning in all of this. Is the general public unintentionally walking around like “muggles”, unaware of the wizard and witch warriors around them affected by lyme disease? As in the books and movies, the muggles do not see things in the wizardly world. Not their homes, their castles, their secret places. Then for sure they wouldn’t see their pain.But Kelly is helping to change all that. By bringing the often invisible disease chronic lyme to the forefront. By sharing her story. By raising awareness.

Kelly, you are a heroine, like Hermione. A herione of haphazard lyme hell. 

See Kelly’s story a here:

 

 

 

And as seen on the Katie Couric Show:

Kelly on Katie Couric

DISCLAIMER: Um. So..er…uh…I’ve never actually read any of the Harry Potter books. And never really understood the movies. But wikipedia makes for great cliff notes 🙂 Just don’t judge me too harshly me on my Harry Potter facts…!

What follows is my interview for the January issue of NDNR, a naturopathic doctor newsletter. The intreview is conducted by Dr. Mark Swanson, ND, someone I have had the privilege of knowing for almost 16 years. He has been a great support to me, and I appreciate his offering me a voice in NDNR. The treatment plans discussed were the treatment plans at the time of this interview. Please note, lymies, I made my plea to the naturopathic community, we need their help! Check out the pdf from NDNR here: NDNR

Gluten-Free Lyme Whisperer

Interview with Joy Devins, patient and advocate.

with Mark Swanson, ND

This issue of The Expert Reportis a refreshing reminder that healing wisdom and learning comes

as much from listening to our patients as it is does from the science, knowledge and understanding presented by fellow

ND’s and colleagues, medical specialists, researchers and

academics. Our special guest is Joy Devins – a New Hampshire resident, naturopathic patient and

health advocate. At 37, she is a vibrant and busy working mother, a runner and athlete, nutritionist,

and fills a top executive position with a leading nutritional supplement company. She also faces her

own personal health “issues” – namely the dual conditions of gluten intolerance and Lyme disease.

Not surprising, she has met many other fellow “Lymie-Glut’s” through her support outreach and blog,

www.lymewhisperer.com

She knows she is no longer alone or feels isolated. She’s found the voices

in the dark and as a result has made lasting friendships and close healing bonds.

Through a health partnership with her naturopath, she has been successful at turning her

health crisis into a proactive health challenge that refuses to let her become a victim of her conditions.

As a result, she is winning this long battle of endurance, conquering new heights, and now offers

inspiration and hope for others like her. Joy has agreed to share her patient story, and insights on her

health and healing journey with revealing details of her medical history, treatment protocol and

passion for advocacy.

“I was thankful for all the things it wasn’t”

What’s your secret to staying healthy in the faces of Lyme and gluten intolerance?

Positive attitude is number one, good fortune is number two. When I was diagnosed with

gluten intolerance, I adopted a gluten-free lifestyle from that moment on and never looked back. I

never focused on what I couldn’t eat, only on the many things I could. My diet is much more diverse

and healthy now, and I don’t miss a thing. I say good fortune because I have been working in the

supplement industry for many years, have met many health professionals like yourself, and was very

aware and educated on gluten already. Because of these things, it was more or less a seamless

transition for me.

Lyme disease—not so seamless. Lyme disease is a debilitating, isolating illness. I spent several

years with frightening symptoms and no answers. Once the diagnosis came, I was thankful for all the

things it wasn’t, despite the private hell that Lyme disease is. I knew I would be here for my kids, so I

was relieved, grateful and ready to fight. My gluten free diet, physical activity, and knowledge of and

access to all the right supplements has been paramount to my health. I even ran my first 5K for Team

Lyme this summer, and I haven’t stopped running since.

What came first Lyme disease or gluten intolerance?

I can’t be sure. I was diagnosed with gluten intolerance first. In fact, because of some of my

Lyme symptoms—tingling and numbness in the hands and feet—I was tested for celiac disease, which

was negative. Then later tested for gluten intolerance, which came back positive. I adopted the

gluten-free lifestyle, but the tingling never went away. Two years later I was diagnosed with Lyme

disease.

“…I had obvious symptoms for two years before being diagnosed”

How long did you have symptoms of each before they were diagnosed?

I have probably been gluten intolerant for most of my life. I’ve had psoriasis since early

childhood. As an adult following a gluten-free lifestyle, my psoriasis is mild and at times has been in

almost complete remission. Before going gluten-free, it was moderate to severe. Regarding Lyme

disease, I had obvious symptoms for two years before being diagnosed. Looking back, there are some

instances before then that make me wonder if underlying Lyme was to blame, including two very

difficult pregnancies and recurrent back problems. I never saw a tick, and never had a bulls eye rash,

fever, or joint pain.

Do you recall the tests performed?

I had the genetic test for celiac disease, which was negative. I also had salivary IgG and IgA

which diagnosed the gluten intolerance. Regarding Lyme, I had a Western Blot, which was

inconclusive, followed by a CD57 count, which was indicative of Lyme disease.

Are you surprised that many others have both Lyme and gluten problems?

No, not at all. I have met many fellow “Lymies” through my blog who were diagnosed with

Lyme and are now on gluten-free diets. They described their Lyme symptoms as worsening, especially

headaches and stomach problems, when exposed to gluten. A number of people indicated that their

food issues did not stop with gluten, and that they gradually became unable to tolerate other foods as

well. I am also the founding member of a Lyme support group in my community. At our last meeting, a

participant described experiencing allergies to new foods often, sometimes every 4 to 6 weeks (which

coincidentally coincides with the Lyme bacteria life cycle). She has suffered with Lyme disease for 21

years and her only symptoms have primarily been food allergies. Another member described sinus

infections and persistent environmental allergies as her most obvious symptoms.

What are your most common and most bothersome symptoms?

The nerves in my hands and especially my feet are constantly tingling, vibrating or pricking like

pins and needles. I’ve gotten used to feeling like I’m short circuiting. I’m forgetful. I have muscle

twitches all over my body. I have vertigo. I’m forgetful. My bladder is inflamed and spasmodic. Did I

mention I’m forgetful? I need to write things down everywhere, and all the time, so I don’t forget

them. And I have to push through fatigue every day. But most of all, it’s the back pain. Did I mention

forgetful too?

How would you characterize your digestion and GI function before and after being on a gluten-free diet and Lyme therapy?

I was fortunate in that I really didn’t have many GI issues from the gluten intolerance. My issue

was mostly my skin, specifically the severity of my psoriasis. With Lyme, however, GI issues consume

me at times. First, there’s the antibiotic-associated diarrhea. Second, there’s a recurrent flu-like GI

distress. I have periods where I don’t experience it, then periods where I experience it every few

weeks. It’s hard to say if it’s a Herxheimer reaction from the die-off of treatment, or the Lyme itself.

Even though the GI issues are bothersome, I tend to worry more about the effect of Lyme on my blood

sugar and hormone endocrine function. My fasting blood sugar and progesterone levels are higher

now with Lyme than they were before.

How many physicians did you see before you found the right one?

I saw six specialists and ended up in the ER. I bounced from one doctor to the next for two

years. My symptoms were dismissed by my primary care physician and the neurologist as being stressrelated,

once MS and a B12 deficiency had been ruled out. The urologist, optometrist, and ob/gyn also

found nothing, despite the symptoms that brought me to them. I thought I was

dying and no one could help me. And yes, all the while working and being a

mom. Finally, I landed in the hands of a competent Lyme literate naturopath, one of the smartest and most intuitive people I know.

Can you share some of your naturopathic treatments, a protocol that works for you?

As with the Lyme antibiotics, the herbal or natural protocols change every few weeks or

months, as you adapt your protocol to your symptoms, which tend to migrate with the bacteria. In my

first year of treatment, I mostly used herbal tinctures containing garlic, licorice, and Uncaria as an

example, to target the bacteria, along with a high potency probiotic. In my current second year of

treatment, I am taking a ,more potent form of Uncaria extract that’s free of tretracyclic alkaloids

(TOA), Banderol bark extract, olive leaf extract, and maitake mushroom to target Lyme. I plan to add

andrographis and resveratrol to this protocol soon. I also take homeopathics to target the co-infection,

in my case bartonella. I also take a teasel root tincture and a greens protein drink for detoxification.

Lastly, I take systemic enzymes to help lessen inflammation and as a result some of my symptoms. In

addition, I continue to take a high potency probiotic formula too.

Are you also taking antibiotics for these conditions?

I have been on various combinations of antibiotics for two years prescribed by my ND. I

currently take azithromycin, 500 mg once per day and minocycline, 200 mg twice per day. These

target the Lyme bacteria in its spirochete, or spiral, shaped form. In a few months I will start

metronidazole (Flagyl), an antibiotic that goes after Lyme in the cystic form, the form it likes to hide

out in. I am hoping to come to an end to my antibiotic therapy within the next six months, but it could

be another twelve months or more. We may decide that I will never reach a point of being totally

Lyme free and discontinue the antibiotic treatment. At which point I’ll maintain a natural protocol,

probably for the rest of my life, to keep my health in balance.

“I’m so grateful for the health that I do have. I try to make every day a good day.”

Does it cycle in you, with good and bad days?

Again, it mostly all comes back to attitude. I try to make every day a good day, despite it all.

Except when my bladder acts up! Then there are some definite logistical issues. I’m just so grateful for

the health that I do have. I think that the gratitude and inner strength is what people “see” when they

tell me I look healthy or good despite the Lyme. On my “bad” days I power through fatigue, vertigo,

back pain and brain fog. My symptoms do tend to get worse or change in 4-6 week cycles, sometimes

longer. Sometimes the worsening of my symptoms coincides with a stressful week, a full moon or with

my menstrual cycle. My symptoms always get worse in the fall and winter, without the summer sun.

“I also have a child with Lyme.”

How do you get through all this mentally and stay motivated to follow your treatment plan?

To push through the physical and mental challenges every day? I’m a warrior for my kids! I

want them to have a strong mom and to see me as nothing but. I also have a child with Lyme, and

need to be a strong role model for him. My 8 yr old is also on azithromycin 200 mg/5ml once per day

and rifampin 150 mg/5 ml., twice per day. He also takes the Uncaria, Banderol bark, maitake, and

probiotics. We go to the same ND for our Lyme. He is a hockey and baseball player on top of and

despite it!

I have no choice but to be positive and persevering. I am lucky to enjoy my work, my

colleagues and employees, and that gives me purpose every day. They would say I am a productive

and effective leader that has risen and continues to rise above this challenge. That motivates me even

more. I want to be an inspiration within the Lyme community, for being physically strong and fit. That

is also a great source of motivation for me. Lyme has been a horrific journey, but it has also been a

blessing. I wouldn’t change anything for the strength I’ve found, the lifestyle changes I’ve made, the

prioritizing I’ve done, and the amazing people I’ve met, especially my new Lyme friends.

What can the naturopathic community do to better support individuals dealing with

Lyme and gluten sensitivities?

ND’s can help us have a voice and can be our advocates too. ND’s can aspire to be Lyme

literate by joining ILADS, the International Lyme and Associated Disease Society. There are so many

obstacles, controversies and dead ends for Lyme sufferers. We need more naturopaths to take a stand

for us. This is the epidemic of our time, the stats are out there. I know this to be true firsthand from

my blog, http://www.lymewhisperer.com. I have followers from all over New England and the Northeast US,

Pacific Northwest, Missouri, Montana, California, Kentucky, Texas, Florida, Ohio, Virginia, Pennsylvania

and more. Internationally, Canada, the UK, the Netherlands and Australia. All of them suffering with

Lyme and many also with gluten intolerance. And so many of them with nowhere to turn medically. In

a few short years, I have gone from knowing no one with Lyme to many in my community alone. My

doctor’s practice has grown and expanded and moved several times to accommodate the explosion of

new cases. I fear that we won’t have the doctors we need to handle this epidemic. We need you!

This is my plea.

“The naturopathic community is one of the few trusted places we can turn”

You have the podium…and we are listening.

Gluten intolerance will always be a silent struggle, but with diligent gluten avoidance it is quite

manageable personally and socially. Chronic Lyme disease is a much greater struggle and needs more

understanding, rightful recognition and medical acceptance. One needs not have had a bulls eye rash,

fever, or joint pain to be a candidate for Lyme screening, contrary to what some medical

establishments believe. The medical community and insurance companies should expect that many

months of treatment will be required for chronic Lyme. Its quite commonly “brushed off” as a

psychosomatic illness that “developed” after the initial short course 30-day antibiotic regimen ends

(and fails). So many chronic cases are faced with mounting medical bills for their ongoing I.V.

antibiotic treatments because insurance refused to cover after 30 days. When someone is diagnosed

with other chronic illnesses the medical profession seems more resourceful and supportive. In

contrast, a diagnosis of chronic Lyme disease means you more likely be shunned and not viewed as

being seriously ill. Its frustrating. Why was the vaccine pulled so prematurely, and why can’t it be brought back? Why did

research at UC Berkeley on anti-borrelial serum proteins from the western fence lizard stop, without

the chance to be developed into a treatment? There are so many unanswered questions obstacles,

controversies and dead ends for Lyme sufferers. With more help and recognition, we can prevent

other people from suffering our same journeys. The naturopathic community is one of the few trusted

places we can turn. We need you to take on the challenge of Lyme disease, particularly diagnosing and

treating it. That’s how you can help us most.

… So when you go to a party, club or something and see someone eating crackers or

pretzels – do you get like all wigged out, or stay OK with it and just keep dancing,

tingling feet and all?

Ha! The pretzels and dip are hard. Oh my! Just bring on the gluten-free beer!

Dr Swanson’s closing comment:

Thank you Lyme Whisperer! More than any other health care provider, naturopaths listen

most and embrace learning from their patients. Many will strive to meet your plea, even as far away

as here in the Northwest and beyond! The late and beloved Dr. Bastyr said,

“It’s not the doctor that does the healing, it’s the patient”.

Joy, your healing journey with the inspiration and hope it brings to others is no exception.

© The Expert Report™ Mark Swanson, ND / The Good Doctor, Inc. 2012. All Rights Reserved

NDNR

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!!!

Mums The Word

United States (Alaska incl.) - Satellite image...

United States (Alaska incl.) – Satellite image – PlanetObserver (Photo credit: PlanetObserver)

Yes, having a mum and being a mum means you can be in the crossfires of worry and anxiety for each of them. Like I am right now, Borrelia…Maybe it’s all just coincidence. But maybe it’s not. What my mum and my son are going through right now. Each of them with symptoms that immediately make me speculate (and panic) that lyme disease is pulling their strings like an evil puppeteer, too. Maybe I’m unnecessarily projecting my experience to what they are each separately experiencing.  Or maybe I am so in tune with lyme I can smell it a mile away, with the fierceness of a shark detecting a droplet of blood in the water.

The article I am reading by Katina I. Makris, CCH, CIH, makes me believe I am that shark, Borrelia. That maybe my hunches and senses are right. According to her article in the New England edition of Wisdom; of the heavens, earth, body, mind & soul,  The CDC believes that there are over 300,000 new cases of lyme disease each year, and that only 10% of them are diagnosed. That leaves 270,000 undiagnosed cases. Partly to blame, doctors who are too relaxed or uninformed or quite frankly just stubborn and ignorant. Also, lab tests that have an error rate of 60%. Climate change could be a major contributor to the prevalance of this disease. Even in the northeast, winters have become unseasonably warm, allowing ticks to “winter over” instead of die from frigid temps. As Ms. Katina points out, lyme disease is a ravaging and misunderstood epidemic that has exploded past HIV in terms of growth rate, making it  the number one infectious disease in the U.S.…why shouldn’t I be worried right now, about my mum and son…

MY MUM:  For the last 5-7 years, my mum has struggled with immune and joint related issues. She seems to be a complex case and northern Maine rural medicine is not well suited to provide her with any real answers. Her diagnosis over the last few years has essentially been a lot of “I don’t knows” followed by a lot of prescriptions to treat what they don’t know they are treating. Which inevitably, only makes things worse. Now she still doesn’t have a root cause of her pain and discomfort, and the meds have side effects of their own. They have described her at times as having borderline lupus and borderline rheumatoid arthritis. Possibly chronic fatigue. All things that you, Borrelia, mimic. They have tested her for connective tissue disease. She has described burning and electrical sensations. And tightness in her upper body, lung and heart area. And pain. Everywhere. Because they have tested her for everything and essential found nothing, they have told her “it’s most likely arthritis.” I bet you are enjoying this little story, Borrelia. Could my mum, who has gardened in my yard for the 11 yrs I’ve lived in new hampshire, have lyme disease? Could she have gotten it while gardening on a visit? Did you prey on her while she was giving the raspberry bush some TLC, Borrelia?? Am I over sensitive to lyme disease and think that anyone with bizarre symptoms must have lyme disease? Am I projecting my own experience to hers? Or am I finally the only one hearing what she’s saying? We’ve even taken pause at some of the similarities of our symptoms. The electrical jolts. The tight band in the upper abdomen. Burning feet. You know what I’m talking about, B.  I hate to add to her medical woes and appointments, but I recently told my mum while on vacation, that we need to find her a naturopath or lyme literate doctor. And that is at the top of my priority list, to help her do this.

MY SON: I could just excuse it as having lyme on the brain. My own case. Worried about my mum’s potential case as described above. However, my son did get bitten by a tick in April. The tick was engorged and sent in for testing, but as luck would have it, either the doctors office lost it and never sent it in or the testing lab lost it after they received it. So, the tick was lost, Borrelia,  and never tested and of course that would have been valuable information. I opted not to have my son tested at the time. He was treated 3 weeks with oral antibiotics. But of course it has weighed in my heart and mind since then. And of course I have been on guard about any potential odd symptoms. So yesterday, when he presented with a fever and chills and complained about arm and leg aches and back and hip pain, I can’t help but be anxious about you, you  little bacterial twit.  In the article by Ms. Katina, she mentions the life cycle of you, Borrelia, as being every 6 weeks. With what she described as having a hide and seek like effect on symptoms. Every few weeks symptoms can arise. What if this is arising now, as a result of the earlier tick bite? Are you rearing your terrible little frankenhead right now with my son, Borrelia?? Come out come out wherever you are, this mama is ready to seek. Seek and destroy, that is. I will be making him an appt. I will be having him tested. And god forbid, but if it’s you borrelia and not just a passing virus, this will be the worst game of hide and seek in your life. Course, it could take months to get him to see the doctor. The lyme literate doctors often don’t have appts. available within the next  4-6 months, they are so overwhelemed with patients. That’s a lot of time to let pass by without answers. And sickness in between. I will advocate my best to get him seen at the earliest date possible, Borrelia. Though us lymies are used to waiting and agonizing for answers. I will keep him strong and healthy in the meantime, it’s the best defense. My tendency is to drop everything and focus and fixate on this worry and this alone. Let my housework go. Lose focus at work. Skip exercising for weeks. Until I get answers. However, Borrelia, if you have taught me anything about how to live my life with you  it’s this. One step at a time. One day at a time. And move forward. Don’t stop. Move forward.

Frankenstein

Frankenstein (Photo credit: twm1340)

So, yes, Borrelia, I will go to sleep tonite worrying about my mum, and as a mum myself, worrying about my son. Hence my naming of this post, Mums the Word. However, remember one thing, Borrelia. Make no mistake.  I will never be mum or silent about you. I will talk, rant, educate, blog, whatever I need to do to inform others and their families as best I can.

Mind Freak

“You’re the best mommy in the world…but you are very forgetful!”….is what my 5 year old daughter told me this morning, Borrelia. My lyme-mentia is apparent even, maybe especially, to her. Which got me to thinking…about all the ways you make me a mind freak, Borrelia:

  • Like how EVERY  morning, after standing in the shower for a few minutes, I realize I have no idea if I’ve already shampood my hair or not. EVERY morning.
  • Like when I was searching frantically for my cell phone while TALKING to my friend Katrina on it.
  • And how about boiling the lettuce instead of the pasta?
  • I should approach starbucks with my new idea, Borrelia. Lyme Latte. There has got to be other lymies out there trying to caffeinate themselves out of brain fog and confusion as much as I am.
  • How about those barbecue and peanut butter sandwiches? Instead of jelly….
  • The constant s-s-s-s-stuttering and stam stam stammering
  • And why can’t I ever spell Borelia the same way twice?
  • What about the popsicles I put in my son’s lunch box three days in a row. Until the teacher wrote a note home saying dear parent….popsicles melt when not placed in the freezer.
  • And my prescriptions! I’ve paid for some of them twice! Because somehow I lose them between the pharmancy, the car, and home?! And insurance doesn’t cover them the second time around! Surely the pharmacist thinks I’m up to something, like selling…
  • Everyday I am in password purgatory because of you Borrelia! I mean how the HELL am I supposed to remember all my fb, linked in, outlook, comcast, banking etc etc passwords!
  • The light switches in my house. Why do they suddenly confuse me so? Is this the backyard switch or the garage? Kitchen or front porch? Because of YOU and this damn lyme-mentia!
  • How about all the voice memos I need to leave myself every day on my iphone, Borrelia? Does that amuse you? I even need to leave voice memos to remind me to check my voice memos?…and sometimes by the time I press record I have no idea what I was even going to say.
  • Writing on my arm, that’s a good one. I gave up on stickies. Was writing things down only to lose the darn sticky. So that’s when I became known around the office for writing on my hands AND arms all the notes I needed to get me through the day…or next 5 minutes.
  • You’d think I could take my vitamins religiously. With all the bottles lined up on my desk staring me in the face. But no…of course not.
  • This might be my son’s favorite, Borrelia. I need to ask him every morning if I have matching earrings on. Because I embarrased him one day by wearing two different ones.

In fact, Borrelia, I’m looking forward to his summer vacation. School can be torture for working lymie mom’s–bring money, bring candy, sign this permission form, sign up for this field trip, get tickets for raffles, send in the book order, come to the book fair, bring cupcakes, bring hat for hat day, bring bike for bike day, pajama day on thursday, field day friday, bring in overdue library book, bring in box tops, family fun day next week, movie night next month etc. These details, these details, Borrelia I can’t take it. My brain can’t take it! I can’t take you!

This is day four of my blog, Borrelia. I thought it would feel therapeutic. But I have been reading more about lyme disease and treatments and prognosis and wonderful blogs from fellow lymies–more reading and researching in one week then I have in three years…and now its on my mind more than ever. And well, I have kind of felt like crap all week. Tired. Weepy. Out of it. Down. Maybe it was best when I just ignored you…I don’t know….

Under our Skin

We are coming for you, Borrelia Burgdorferi, aka the bacteria that causes lyme disease. Someday,  lyme doctors won’t be targeted or lose their  medical licenses for believing in and treating chronic lyme disease. Someday insurance companies and skeptic medical “professionals” won’t turn their backs on this epidemic. Someday. Awareness grows and we ARE coming for you and anyone else who gets in our way…