Tag Archive: Western Blot


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