Tag Archive: Conditions and Diseases


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!! 🙂

 

 

 

The kids at Magic Kingdom!

The kids at Magic Kingdom!

On Tuesday, April 23rd, at 8:30 pm,  at Disney’s Animal Kingdom Lodge, I had the scare of my lyme life.

We had been driving that day from the first leg of our vacation in Fort Lauderdale to Orlando, to start our Disney adventure with the kids. After arriving in the afternoon, we immediately hit the pool where we swam, sun bathed, and enjoyed the poolside games. We also enjoyed the resort grounds, teaming with waterbucks, antelopes, giraffes and zebras! We refueld with a great Aftrican-themed dinner at the resort’s Boma restaurant–great african inspired cuisine made complete for me with the addition of an ice cold gluten free beer, called Omission. Omission. If only I could omit you Borrelia, if only!!

We were winding down for the evening, chilling at the arcade, then the hotel balcony. This is where things started moving in slow motion. Slow. Agonzing. Terrifying. Motion.

I came in from the balcony to get the kids pajamas out. I bent over a suitcase, and suddenly felt my leg fold from under me.  It was a bizarre folding sensation. More like my leg was melting. Oh, I thought. Something is terribly wrong, terribly.  This slow, warm, numb rush slithered up my leg, as it went numb. I moved, hoping to shake it off. Then my arm was under the same gripping spell and I fell to the floor, unable to move my entire left side. Then my neck and head succumbed, it was like weights were tied to me. I felt like my entire left side had melted to the floor and left me in a puddle like the wicked witch of the west. Only you were the only wicked witch of the west that  day Borrelia. The wicked witch of the west, east, north south…and every direction in between. Only I didn’t know it yet.

I screamed out, in disbelief of what was happening. “I’m having a stroke, I’m having a stroke!!!” I screamed out to my husband, banging at him on the glass door to the balcony. All the while my kids terrified and panicked. I thought I was going to die that night, in front of them. I was struggling not to pass out and in disbelief and full panic mode. I can’t believe I might leave them motherless, I cried, this can’t be happening.

The paramedics arrived. “Can you move your left foot?” They asked. No, I could not. “Can you lift your left arm above your head?” they asked. No. I could not. This was not looking good for me. They agreed they needed to bring me to the ER, it may be a stroke. At this time Borrelia, there was nothing in my mind that pointed to you. I had been going about my life just fine. Ended my lyme treatements 4 months ago. Feeling fine. Dizzy. Buzzy feet. Twitchy. Just the norm stuff. It never occurred to me you had joined our little family vacation in such a big, uninvited way.

At the hosptial, they immediately did a chest xray to rule out a blood clot to the lungs. Followed by an EKG. Then a cat scan. Then bloodwork for a heart attack. All the while I just cried and sat and prayed. I could not believe my new reality might be that I had just had a stroke.  I thought of all my neightbors, friends, coworkers and family I ‘d have to tell and I felt embarrassed and hopeless. But that was only if I made it through the night I thought. God, please let me make it. I won’t leave my kids, I won’t. Why was this happening I kept asking out loud with my husband holding my hand. I take such good care of my self. In damn good running form. Eat excellent. Do everything right. Why was my body failing me?? The stress was going to kill me if a stroke didn’t first.

The first round of tests ALL came back normal, an instant burst of relief. But I was admitted over night for observation. They had ruled out a heart attack and major stroke, but I needed an MRI to rule out a TSI, transient ischemic attack, or mini stroke. Dammit, I wasn’t in the clear yet. Nor would I be for the next 14 hours, which is how long it took them to get me the MRI.

I did nothing but sat motionless in my bed. Waiting. Didn’t watch tv. Didn’t talk. Didn’t sleep. Didn’t eat. Just waited. I saw three doctors. The first two didn’t even hear me say “I have lyme disease”. Well, they chose not to, as you would imagine. But the third. He was like a prince charming of sorts. Young. Compassionate. Calming. And when I told him I had lyme, he nodded his head in understanding. In UNDERSTANDING!!! “Well, then” he said assuredly and sweetly, “this could certainly be in the realm of lyme”! WHAT?! A mainstream MD just acknowledged and understood and agreed lyme could be a suspect? In fact, he believed it was the case, even before my MRI results came back. He even could barely wait to be informed of the results, almost just to confirm his suspicion. God Bless this kind hearted, open minded professional. For the first time I felt some hope. I called my lyme ND on her personal phone. She assured me she had seen this type of response before and would get me back into her office to figure out our next plan of attack. God Bless her too. I told her I loved her and  hung up the phone.

MRI negative!! MRI freakin’ negative!! No mini stroke either! I could have jumped up on my hospital bed and performed “The Little Mermaids’s Magical Voyage Musical” right then and there! I was so happy and so relieved!! Walked out of that hospital cursing Borrelia but at the same time, thankful it was just that and nothing else! I was going back to the hotel to see my kids!!!!!

Next day we shake rattled and rollercoastered our way ALL over the Magic Kingdom!! Space Mountain, Splash Mountain, Thunder Mountain! Sure,  I was a little leary. And weak. And dizzy. I had to laugh, wondering if all this jarring and jostling and twisting and turning on all the rides was going to shake up Borrelia all over my body and make things worse….or scare her away! HA! I didn’t care! I didn’t have a stroke and I was going to have fun and enjoy and show the kids mom was tough and nothing was going to spoil our fun!

Okay, so maybe I over did it that day. Just a little. Next day, I had to tame Hollywood studios from a wheel chair (see pic of me from my wheelchair). And during each show, when the lights dimmed, I wondered is that me or the lights? Was I about to pass out? When air conditioning blew on my legs, I wondered if it was the air or if I was going numb and limp again. With each step, I wondered if I would fall. Yes, Borrelia. It’s always hard to know with you. But screw you. I wasn’t going to let it stop me. Despite the fear and discomfort and dizziness and weakness. And by the way. Speaking of Hollywood Studios. I am the Director of me. Not you.

And the smiles on my kids faces, the smiles!! But my poor daughter. Asking me if I can smile for her about every 5 minutes. She was checking to see….if I was having a stroke. How could you scare her like that, Borrelia, how could you?

wheelchair

Me, in a wheelchair at Disney’s Hollywood Studios.

And so I have returned. To NH. To begin another work week tomorrow. To await an appt. with my lyme ND next week. Here I go again. On that roller coaster of lyme.  Hey Borrelia. Mickey Mouse called. He doesn’t want to see your kind of roller coasters at Disney World ever again. Ever. WTF.

 

In the spirit of a previous post 27 Ways to Get Sh&t Done…When You Have Lyme Disease, tonite’s post  is 10 Things I’ve Decided Not to Stress About…When It Comes to Lyme Disease, inspired by an article called 10 Things I’ve Decided Not to Stress About by Sarah Klein in a Huffington Post article.

1. I’ve decided not to stress about missing the Route 2 exit. Like twice a week. While driving on I-495. On my way to work. Because I’m….well, I’m not really sure what I’m doing. Spacing? Thinking? Not Thinking? Day Dreaming? Forgeting where I’m going? All of it? For all I know, the detour could lead me to the coffee shop of my dreams. Ah yes.

2. I’ve decided not to stress about my cold cold hands, cold feet, and my cold to the core body, despite the fact that I spend entire weekends at hockey rinks watching my kids games. I will hold a hot beverage. Wear long underwear AND ski pants. Double up on socks. Sit on a blanket. And stuff my pockets with tissue. And I’ll focus my energy on the refs, er, uh, game.

3. I’ve decided not to stress about long days at work, especially ones that involve late business dinners. I will fuel myself at each phase of the day, whatever it takes to get me to keep on keeping on. Coffee in the morning. Tea and chocolate in the early afternoon. Trip to the frozen yogurt shop in the later afternoon. Glass of wine at the bar. Dinner that I don’t have to cook. Cappacino before the drive back home.

4. I’ve decided not to stress about my coffee habit. In case you haven’t noticed, it’s been directly or indirectly eluded to in the last three points. I know, I know. I’m not doing my adrenals any favors. At all.

Coffee cup

Coffee cup (Photo credit: @Doug88888)

5. I’ve decided not to stress about not being religious about taking my herbs. The stress of not taking the herbs is far more deleterious than not taking the herbs to begin with. Besides, give it a few weeks and I’ll have to change protocols anyway.

6. I’ve decided not to stress about forgeting my grocery list. I mean, we eat the same thing week in week out anyway. How hard can it be to wing it? Wait, what did I buy last week??

7. I’ve decided not to stress about how my lyme brain can handle quarterly reports, presentations, and budget plans. That are all due at the same time.  I will learn to do in 1 day what used to take me 1 week. I already have. With a little help from…all together now….coffee.

8. I’ve decided not to stress about my clothes never fitting. And getting increasingly baggier. Because of meds. And being busy and active. It’s not like my heart will be broken if I need to go to J.CREW at the outlet mall…AGAIN.

9. I’ve decided not to stress about my dark under eye circles. I’ll brighten up my look instead. Highlights make everything better. They may actually make the world go round.

10. I’ve decided not to stress about the all over twitching and buzzing and fumbling over words. Honestly, it would not feel normal NOT to have these sensations and frustrations. THAT would be stressful!!!

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 Report™ is 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

P.U.S.S. n’ Hoots

Puss in Boots (Shrek)

Puss in Boots (Shrek) (Photo credit: Wikipedia)

Borrelia, this post was inspired by guest columnist Toni Bernhard of Psychology Today, specifically by part two of her article “What Those with Chronic Pain or Illness DON’T Want to Hear You Say“.  As Toni prefaced in part one,  the purpose of her piece was not to make fun of those whose comments are off the mark (because most people have good intentions), but rather to make those with health difficulties feel less alone and to help friends, family or others understand how some of their comments may be perceived. The article shares examples of comments that a friend, family member, coworker or fellow worshiper made to a person with chronic disease, followed by the thoughts and feelings of that person with chronic disease in response.

I laughed and nodded at the examples she gave, and could very much relate. So it inspired me to come up with my own sets of examples, but with my own spin. Interactions between what I will call a P.U.S.S. (Poor Un-Suspecting Soul) and the lymewhisperer (LW), just for hoots. Because the P.U.S.S. in the examples below is simply making ordinary life observations–not making comments related to chronic diseae–and would have had no reason to expect the sarcasm of the lymewhisperer. And because the sarcastic humor of the lyme whisperer isn’t reserved just for you, Borrelia!

P.U.S.S: My foot fell asleep for three minutes!

LW: My foot fell asleep for three years.

P.U.S.S: Wow! That ride made me dizzy!

LW: Being awake makes ME dizzy.

P.U.S.S: I have a photographic memory!

LW: Memory…memory….I forgot what that means??

P.U.S.S: Wow, I can’t believe how much these turnpike tolls cost.

LW: Wow, I can believe how much the toll of lyme disease costs…let’ see, doctors visits, antibiotic, probiotics, dark circle eye cream…

P.U.S.S: I’m so tired.

LW: I’m so tired of being tired of being tired.

P.U.S.S: I need a sugar fix.

LW: I need a body fix.

P.U.S.S: Top of the mornin’ to ya!

LW: Actually, mornings are rock bottom.

P.U.S.S: Man, I really hate being in the lime light!

LW: Man, (long pause)…. I really hate being in the lyme light…

 

So there you have it, Borrelia! A creative little exchange with me and a P.U.S.S….just for hoots!!

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.