Sunday, February 27, 2011

Thus happiness is a gift ...

By Susanne, Spirochicks contributor

Last night we watched Nicholas Nickelby (2002) based on the novel by Charles Dickens. I was so moved by this summation of the story I had to share it. 

"No matter how full or empty one’s purse there is tragedy. It is the one promise life always fulfills. Thus happiness is a gift. And the trick is not to expect it but delight in it when it comes.  And to share in other people’s store of it."

I think it's easy to forget that in centuries past, hardship was the norm. And it still is the norm in many countries outside our own. We've come to expect the good life: health, wealth, and happiness. I LOVE this quote because it is a reminder that life IS hard. So you better revel in those moments when happiness passes by. It is often easy for me to indulge in life's hardships and over focus on the have not's. But to expect hardship and view happiness as a gift puts an entirely different perspective on life, one that is not mainstream in our culture.

I think "delighting in it when it comes" can take on many forms. For me it's reveling in a moment around the dinner table with my family and we're enjoying some anecdote from the day. Sometimes it's on a long car drive and we share some common experience. Sometimes happiness comes at the expense of tragedy. Like when we hit a dear on the highway and no one was hurt, but we had to have our car towed 150 miles home. I could revel in the fact we were all okay. And we shared a few chuckles at how many husband responded to the shock of hitting a deer who literally jumped into us. 

Happiness is often a flash in a moment of my day amidst the challenges of living. Learning to delight in these moments expands my view of happiness. And sharing in these moments with others creates the same sort of expansive happiness. I was born a pessimist. But learning to view happiness as a gift has produced a more authentic joy amidst the challenges of living life with chronic illness and all the typical other hardships of life.

Wednesday, February 23, 2011

Working on Your Degree to Become a Professional Patient?

By Amy, Spirochicks Contributor

This is Part II of the Professional Patient articles. For Part I, see Are You a Professional Patient?

This past summer I had an experience that made me stop and consider how my mindset might be affecting my health. I began to wonder, was thinking of myself as a chronically ill person who was constantly researching, discussing, and trying out treatments somehow keeping me that chronically ill person who was always researching, discussing, and trying out yet another treatment? Would changing my mindset to think of myself as a fully recovered person change the outcome? I don't know, but I've been thinking about this for several months now and am beginning to formulate some thoughts which I hope share with you in part III of this series.

In the meantime, since I like to have fun even though I am chronically ill, I thought I'd put together a checklist of a few things that might indicate that you're working toward becoming a Professional Patient. Kind of like those silly tests in women's magazines. Just for fun. I think these are things that so many of us Lymies relate to, so I hope you'll find it entertaining as well.

Signs you may be working on your undergraduate Professional Patient degree:
  • You diagnose yourself with Lyme disease before your Primary Care Physician even/ever mentions it
  • Your social life consists primarily of hanging out on the various Lyme boards swapping stories with other Lymies about treatments, herxing, and all your varied, sundry, and yes, often bizarre symptoms
  • You know the history and the full name of the word “herx” (or soon will)
  • You spend lots of time looking up new supplements and treatments, looking for things that will help you get well
  • One of your favorite topics to discuss with family and friends (much to their chagrin) is your health and treatment
  • You are starting a list of supplements and treatments you might want to consider trying at some point in the future
  • You have heard of coffee enemas but can’t imagine why anyone would actually do that
  • You have heard of the gluten-free, casein-free diet but can’t imagine how anyone could do that
  • You have heard of muscle or energy testing but when you’ve heard how it’s done you’re skeptical, to say the least
  • You know who Burrascano, Buhner and Klinghardt are, and what IDSA, ILADS and Igenex are
  • You can explain all these: brain fog, floaters, red crescents, tinnitus, EM rashes, EBV and HHV-6

Signs you may be working on your advanced Professional Patient degree:

  • At your first appointment with a new doctor they ask if you are an M.D. yourself
  • You frequently bring in new treatment options to discuss with your non-mainstream, well-versed LLMD and s/he may have heard of it but doesn’t have any experience treating patients with it
  • Your doctor often tells you that you are the first patient they have doing a particular treatment
  • You have boxes and boxes of supplements, nearly all of which you have tried and all of which you know what they are for
  • You are bored when anyone talks about anything other than Lyme disease, treatment options, or your symptoms and you frequently change the subject of conversation back to these topics
  • You have an active list of supplements/treatments/diets/medical devices you want to try next and you are excited each time you get to start on something new to see how you will react to it
  • You do regular coffee enemas and have taken to referring to them as your “frenemas”
  • You have been fully GF/CF for months and months and you don’t EVER cheat because you understand the biology behind avoiding gluten and casein
  • You are so reliant on muscle/energy testing that you’ve been learning how to do it yourself so you can energy test everything, from foods and supplements, to shampoo, lotion, and make-up, whatever and whenever you want
  • You can explain all these: HPA axis, methylation, chelation, glutathione, cytokines, XMRV, and c4a

Let me know if you have anything else fun to add to these lists!

Interested in changing your mindset so you don’t end up a Professional Patient for life? Look for my Professional Patient Part III article coming soon!

Are You a Professional Patient?

By Amy, Spirochicks Contributor

This is Part I of a three part series on being a Professional Patient.

Over the summer I did a series of IV treatments that were extremely grueling and difficult. Every week day for 12 weeks I went to my doctor's office first thing in the morning, waited for up to 2 hours to be seen, spend 1 hour having them get an IV into my overly abused veins, and then spent up to 2 hours waiting for the IV medication to go in. Then I'd go home and feel horrible for a few hours from the medication. All of this took up so much of my day that it was difficult to get anything else done, including eating meals, let alone grocery shopping for my family, for example.

One morning in the middle of this grueling routine, while driving to my doctor's office for another round of all this fun, I realized that I was actually enjoying all of this! How in the world could that be?? It was painful, horrifically expensive, and involved sitting for hours and hours in an office with people who are some of the sickest of the sick. But,I realized that this was the most exciting thing I had done in probably YEARS, it was the most interaction I'd had with other people (and people who "got" me!), and I received a lot of attention from the staff as well as other patients for the ordeal I was going through.

This was totally crazy! I was ENJOYING this whole IV thing, even though it was physically, mentally, emotionally, and financially draining! OMG, I thought. Had I become a professional patient?!?? What did this all mean? Would I never get well? Would I spend all my time in my doctor's office, not socialize with anyone but my doctor's staff, sink all my money and time into treatments for years and years to come? Was this what I had unknowingly become? A professional patient?? This is EXACTLY what I'd always, always told myself I would never become!

A few months after this surprising thought crossed my mind, I was out to dinner with some other Lyme patients. Of course, the topic turned to various treatments and supplements. There is nothing like this topic to get a bunch of Lymies excited and chatting away. We are all so dedicated to finding the next thing that will help us, it always gets us rev'd up. Several people commented that they had a long line of treatments in mind that they wanted to try next, and perhaps they were kind of professional patients. And that's when it hit me. I didn't have a list. For once in the 10+ years of being very sick and working doggedly to learn about every single treatment out there in the hopes of finding the right combination of things to help me recover, for once, I didn't have a single thing in mind to try next, let alone a long list of things to do next. So, I thought, perhaps I'm not a professional patient after all? Perhaps I am ready to move on to the next phase of my life, where I'm not chronically ill and always chasing down the next treatment to do in order to hopefully, eventually, fully recover. In all honestly, after finding myself ENJOYING those IV treatments I did over the summer, this thought comforted me.

But, I wondered, how much do we, at least on some level, keep ourselves from full recovery by being a professional patient?

I had no list of things to try next for awhile there. It's now been about six months now since I was doing those grueling daily IVs, and I have to say that right now, I've got a list of six new things I plan to add into my protocol in the hopes of eventually reaching full recovery. The good news is that these things weren't my idea, but things my doctor wants me to add into my protocol. But, does it matter if it's my list or my doctor's list? Does it put me back into the mindset of the professional patient? My hope, of course, is that these six things get me that much closer to full recovery, and then whether or not I'm a professional patient will be a moot point.

Interested in seeing if you are a Professional Patient? See Part II: Working on Your Degree to Become a Professional Patient?

Tuesday, February 22, 2011

Test, Baby, Test

By Ozone Amanda, Spirochicks Contributor.

The December 8th “Health” section Chicago Tribune article was not true journalism, but an opinion piece. It is a black spot on the Chicago Tribune’s journalistic integrity that it was not labeled as such.

As Paul Raeburn states in his Knight Science Journalism Tracker article, the Tribune article is “what happens when reporters make up their minds about a controversial story before beginning to write.” Raeburn goes on to say that if the Tribune reporters wanted to debate the existence of chronic lyme, that would have been an arguable point. Instead, they drafted a bit of anti-chronic lyme propaganda, complete with the vignette of a patient who believes lyme was manufactured in a government lab.

I say if the media or medical journals want to debate the existence of chronic lyme, bring it on. All of us who suffer know it exists, but scientific debate is the only way conditions and treatments become accepted. With insurance companies, medical authorities, and now, reporters persecuting chronic lyme patients and their doctors, demanding more peer-reviewed, scientific research into the chronic lyme “question” may be the only way to reverse the tide.

Maybe researchers can start by examining lyme testing. Opponents of chronic lyme believe testing proves sufferers do not have lyme, while proponents say testing is deeply flawed. Dr. Klinghardt, a prominent lyme doctor who developed one of the major lyme herbal protocols (and whom Callahan and Tsouderos seem to have ignored in their research), writes: “Bb tends to infect the B-lymphocytes and other components of the immune system that are responsible for creating the antibodies, which are then measured by an ELISA test or Western Blot test. Since antibody production is greatly compromised in infected individuals, it makes no sense to use these tests as the gold standard or benchmark for the presence of Bb (7). Why not fairly examine this claim?

We cannot let prejudiced reporters pre-empt real research by experimenting with words and quotes as a “journalistic” substitute for labs. Chronic lyme exists. We know it. If you don’t believe it, please go test that theory with something other than opinion.

Wednesday, February 16, 2011

The Ozone Itch

Welcome to our newest SpiroChick, Ozone Amanda.

I am itchy all over. I feel waves of irritable, unstoppable heat—they shoot down my arms and make my toes flex with their intensity. Scratchy, maliciously tickly, prickly. But, I refuse to run my fingernails over my skin—like I so desperately want to—because I know it will only make it worse. I’d rather lie here, unsleeping, taunted by my red, bumpy skin, than get some momentary relief only to have the feeling get worse.

It is my second week of ozone sauna treatments and the “rash,” which I was told would result from dead bacteria, viruses and neutralized toxins trying to exit my body through the skin, seems much more menacing than I had imagined.

I’m standing in front of the bathroom mirror now, smearing everything I can think of onto my skin—hydrocortisone cream, radiation burn cream, aloe, a magnetic clay paste. Nothing makes me feel any better. Finally, I run ice-cold water on my wrists to cool down and slump onto the toilet. It’s three am. “Is this really the best way to fight lyme?” I think.

But, then I catch a glimpse of myself in the mirror—a glimpse of my hair. The hair that people used to say made me look like a Pantene Pro-V commercial. The hair that lost its luster and began falling out in earnest around the six-month infection mark, though I didn’t know it then. It fell out until you could see my scalp in every direction, from every angle. And, when I went to have the remaining hairs cut, a hairdresser exclaimed: “Oh, honey! We need to talk!”

The hairdresser gave me scalp treatments and I switched to washing my hair only every few days. I also changed my diet and hair products. But, besides looking like a greasy bum, my hair growth changed very little and my self-esteem fell, along with my overall health.

When I found out years later, that I was infected with lyme disease, I learned that my hair loss was actually a symptom. I began treatment for lyme, but a series of therapies only made me feel worse. After an initial two weeks of having slightly more energy, months on antibiotics eventually wiped me out and left me with awful side effects, like detached and peeling thumbnails. I switched to an herbal protocol and, though there were no side effects, my energy waned and I was soon returned to the couch, with the infection re-surging inside of me. I looked into rife machines, but I was told only certain machines actually worked and I couldn’t figure out which would give me the best chance of success.

Finally, I tried ozone therapy. As I understand it, ozone (or, O3) acts as a kind of natural antibiotic/antiviral. O3 is an unstable compound and, once inside your body, it’s third oxygen molecule breaks off and kills bacteria and viruses, and also combines with the toxins lyme creates in the body, changing their form and neutralizing many of their harmful effects. Using Flood Your Body with Oxygen by Ed McCabe as my guide, I began to ozonate every day.

At the end of the first week, I suddenly realized my three and a half year headache was gone. Actually, until the pain left, I hadn’t even realized I had a headache. A constant level of pain felt so normal to me that I hadn’t remembered that my head could feel any other way.

Now, standing here in front of the mirror, looking at the baby hairs sprouting up all over my scalp, I notice that the bald spots—where I used to attempt a comb over—aren’t really bald anymore.

For me, searching for a lyme treatment that works has been a bit like a Goldilocks experiment, though not nearly as cute. And, undergoing treatment has been just as “fun.” But, I’ve learned to adjust the length and frequency of my current treatments to minimize the side effects, and when my head feels lighter and I look in the mirror, I know it’s worth it.

SpiroChicks does not endorse any treatment. We report them as a jumping-off point for anyone who wants to do more research. Always consult a health professional.

Tuesday, February 15, 2011

Earthing & Lyme Hypotheses

By Alix, SpiroChicks Co-Founder

After first posting in November about the health benefits of Earthing, I am astounded that so many in the Lyme community have responded by trying Earthing - the simple act of putting your bare feet on the ground or bringing Earth's electrons indoors with simple grounding devices.

Many Lyme patients have written about how Earthing is affecting them. Reports range from little effect to slightly better sleep to very improved sleep to full-on herxing. Lyme patients might be the only group who need to be careful not to Earth too much at first. Below I describe an evolving set of hypotheses to explain what Lyme patients are experiencing.

Here are the evolving Lyme-Earthing Hypotheses:

Electron Deficiency

Electron deficiency can explain some of the differences in how people respond to Earthing, according to research done by Dr. William Amalu. He used an electrometer to measure the effects of Earthing on people in a specially-designed building in Iowa. Test subjects who were regularly in contact with the Earth, like gardeners, appeared to take in fewer electrons than people who lived in a high rise and did not do things like gardening. Amalu said it appears that people who are highly deficient practically drink up the electrons. This might account for my personal reaction to Earthing being so strong: I was probably highly electron-deficient from total avoidance of going shoeless.

Blood Thinning and Bb Cysts

We've been curious about Lyme, the blood-thinning aspects of Earthing, and the blood-thinner drug contraindication. (Coumadin is a contraindication when regularly Earthing.) Here are four hypotheses about Earthing and Lyme given what we know about blood-thinners:
  1. Prevention of cell-wall deficient forms: "Blood thinners appear to disrupt the formation of spheroblasts [cell-wall deficient form of Borrelia burgdorferi] in the bloodstream, and that could explain the improvement that some patients experience using Heparin." noted Steven Phillips, MD at a 2004 Lyme conference. The cell-wall deficient forms allow Bb to hide from antibiotics, so if they can't form, Lyme can't hide. Since Earthing is a strong blood thinner, does Earthing also prevent Bb from converting to cell-wall deficient forms? Maybe. 
  2. Prevention of Bb from sticking to brain cells: Heparin has the "highest negative charge density of any known biological molecule." The Earth, if you recall, has a negative charge and donates electrons to cells, causing all to be negatively charged and repel each other, like magnets. This is why Earthing thins the blood. Stephen Buhner wrote that Heparin prevents Bb from sticking to brain cells. Is the negative charge the reason? Would Earthing do the same thing? Maybe.
  3. Vascular penetration: Does the blood thinning aspect of Earthing allow our treatments to penetrate deeper into our vascular system than they've been able to go before, reaching colonies previously left untreated? Maybe. 
  4. Higher O2 delivery: Is the thinned blood more oxygenated, delivering a higher, and therefore more toxic dose of oxygen to the Bb and co-infections? Maybe.
Frequencies and My Thoughts on Deer

Tapping into Earth's natural frequency could be another reason Earthing has an effect on Lyme. Why are most deer infected with Bb, yet most seem to be asymptomatic? If they do have symptoms, why don't we have reports of deer going crazy and presenting with swollen joints? Do infected lab animals show Lyme symptoms because they are not Earthed? Is Earthing part of what protects the deer? When I spoke with David Wolfe, he didn't hesitate to say yes. When I asked Dr. Stephen Sinatra, the famous heart surgeon and co-author of the book Earthing, he mentioned Earth frequencies might be toxic to Bb - causing the cyst forms to convert to spirochetes and enter the bloodstream where they are susceptible to antibiotics. As a side note, one person mentioned that deer eat teasel and other herbs--natural antibiotics that are toxic to Lyme, so Earthing might not be the whole story vis a vis the deer.

Nervous System

The effects of Earthing on the nervous system are well-documented and not specific to Lyme, but I do have to mention that since Earthing will normalize cortisol and helps most people sleep better (75% of insomniacs, according to Dr. Amalu), improved sleep will obviously help insomniac Lyme patients. Clint Ober mentioned that in ill patients, after 16 weeks of Earthing the nervous system will normalize. I'm presuming he means patients who have worked up to overnight, every-night Earthing.

Other Effects

Other effects of Earthing include blood sugar regulation and thyroid normalization. Again, these are not Lyme-specific, but normalizing these functions should be a great boon to eventual recovery.

Indoor Earthing: Important Note about Properly Testing Your Outlet

I've found that the voltmeter (about $10 at your hardware store) is the only way to check for a truly grounded outlet. A voltmeter measures the difference between two voltages.

Caution: you can electrocute yourself if you stick one end in the rectangular part of the socket. Don't do that!

To use it, put the black test lead into the third prong of the outlet - the round one. Hold the red end with your bare fingers and read the AC (not the DC) setting. You will have a steady number when you have a truly grounded outlet AND if you are not touching any grounding device. The number will be the difference between your body voltage and that of the Earth via your grounded socket. If you see a fluctuating number, your outlet is not truly grounded and you can't use it for grounding - instead you must use a grounding rod that goes directly to the outside. If you have a steady number, then touch a grounding device while still holding the red test lead. If your voltage drops close to zero, you are grounded and have confirmed your grounded outlet. See my Earthing video Part 2 for a demo.

If you get an Earthing kit with an outlet checker: The outlet checker is not the same as a voltmeter! Follow up with a voltmeter if your outlet checker lights up two orange lights on the right. This indicates your outlets might be truly grounded, but you need a voltmeter to confirm.

Happy Earthing!

Monday, February 14, 2011

A Valentine's Wish

Lyme is tough on love. It wreaks havoc with our bodies, our emotions and sometimes our relationships. During marriage, we pledge our love in sickness and in health, but chronic illness, with all of it's stressors, challenges even the strongest of vows.

I am blessed with a patient spouse. One of his greatest gifts has been the gift to sleep when I need it, which is still much of the time. He doesn't worry when the house is a mess, which is most of the time, and appreciates that the energy I do have is shared with our children.

A friend once told me that before you can truly love another, you must first love yourself. Wise words. So on this Valentine's day, my wish for you is simple; to find the strength to love yourself, with all the imperfections of disease. The spirit inside that keeps you fighting is amazing! Celebrate it. You are stronger than your body. You have strength beyond words. Yes, Lyme brings pain, fatigue, brain fog, muscle weakness, rage and anxiety, yet it also brings compassion, courage, patience and hope. Sending you a little Lyme love this Valentine's day!

Thursday, February 3, 2011

The Chronic Badass

Welcome to our newest SpiroChick, Candice of Infectiously Optimistic:

Most 21 year olds roll out of bed in the morning, make a pot of coffee, and hurry off to their scheduled college course or newly obtained part-time job. They may go out to lunch with their best friend, stop at the mall on their way home, or head out in the evening for a night on the town with their typical "crew".

Me, well, my life looks a bit different. I'm a 21 year old Late Stage Lyme patient. I've spent the past two years homebound by the secondary conditions I've developed, Multiple Chemical Sensitivity and Dysautonomia (a condition that affects both the heart and blood pressure). This sounds rather terrible, but in my eyes, I'm still lucky.

In my 21 years of existence, I've learned more than most people learn in their entire lifetime. Instead of attending college as I planned to, and mapping out my own life, my life is being shaped in front of my very own eyes as my struggle for health guides me down a path that I would not have otherwise taken. I've had incredible opportunities to learn invaluable information, to meet some of the most extraordinary people, and to be a part of efforts of incredible impact put together by agencies that are dear to my heart. Through this battle, I'm becoming who I was always meant to be, and I'll end up exactly where I was supposed to go. And somewhere along the way, I became a Chronic Badass.

6 months ago, I wrote an article that went over well with those who are battling chronic illness. I wrote about how difficult life is when a chronic illness turns your familiar world upside down, and every day becomes a fight for life as you once knew it. I asserted that though your life may have become unrecognizable, and may look drastically different than the lives of those around you, you should still be proud of the life that you live. You're a survivor, and as you are being lead down the road that will ultimately lead you to where you are meant to be, you've become a Chronic Badass. 

In the article that I wrote, I listed 25 Reasons Why Being a Late Stage Lyme Patient Automatically Makes You a Badass. To my dismay, patients from around the country wrote in and joined the fun. Some reasons quickly became more popular than others, such as...

Reason #1: While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish.

Reason #4. You've opted to have a portacatheter surgically placed in your chest...while you were awake.

Reason #6. A surgeon has said "Oops" while performing surgery on you...and you were awake to hear it.

Reason #10. You've peed just about every color of the rainbow, except blue.

Reason #11. You've juiced more than 7 vegetables at a time, and drank it. You have the tomato seeds on your ceiling to prove it.

Reason #15. You've had a head to toe rash which elicited a "whoa" from a doctor.

Reason #23. While watching Grey's Anatomy, you realize that you have the same blood pressure as the patient who's excessively bleeding on the screen.

Reason #25. You've been sick every day of your life for more than 4 years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.

I began receiving the most odd, fantastically entertaining emails from patients who had been motivated to look at their battles with lyme in a whole new light. I even had someone write to me reporting that she must be an ultra badass because she once peed blue. I also received a number of requests for "Chronic Badass" t-shirts. 

This week, I was given the opportunity to reflect on the 6 months that followed after writing my initial Chronic Badass article. In those 6 months, I faced so many obstacles, but was so imminently blessed, that I was able to lengthen the "badass list" by 5 reasons. An amazing friend also made it possible for me to print 20 chronic badass t-shirts. As this all elapsed in front of my very eyes, I realized that this was all happening for a reason. This is when the list's very last reason became clear to me: 

Reason #30: You find a way to pay for treatment with the amazing doctor whom is saving your life. Despite a loss in financial support, you find a way to carry on in your path to a bright, healthy future.

With help from some of the amazing human beings that I've been so fortunate to meet, I was able to set up a "Chronic Badass" t-shirt shop, and currently have a running Chronic Badass auction that was set up in hope to raise funds for my past due medical bills. It would mean the world to me if you could take a look at both the t-shirt shop and the auction. I know that most of the people that this will reach will be people suffering from chronic illness themselves, so if you are not able to contribute, please know that's okay. My ultimate intention of my original article was to let all of you know that I'm proud of you for enduring and surviving what you do each and every day. I hope that the article brought a smile to your face. Please don't ever forget that though your life might be out of the ordinary, it is still extraordinary, and you are irrevocably a Chronic Badass. 

Link to the Chronic Badass T-Shirt Shop:

Link to the Chronic Badass Auction: