Tuesday, September 16, 2014

Lyme disease: Epidemic. Disabling. Expensive.

by Alix Mayer, Spirochicks Co-founder


[San Francisco, CA] Activists will stage a silent vigil tomorrow in front of the New York Times headquarters asking for more media coverage for Lyme disease, the most frequently reported vector-borne illness in the United States.

Recent data show Lyme disease is more prevalent than previously believed, and that the standard antibiotic treatment is hardly a slam-dunk, resulting in at least 1.5 million who suffer effects of chronic Lyme, outnumbering the 1.2 million people living with HIV. Since more than a third of the 300,000 people who are diagnosed with a new case of Lyme disease will fail treatment, the number with the chronic form of the disease is ballooning by at least 100,000 per year. About a third of those -- 30,000 per year -- will find themselves dealing with a new long-term disability. 

Lyme disease has suffered from a lack of coverage in the mainstream media. More coverage will go a long way toward prevention of treatment failures due to lack of awareness. If you need facts or a lede for your story, below is a list of Lyme facts, with links to source data.

If you are already working on your coverage of the NYT event, remember, Lyme disease is a difficult disease to treat, but it has easy and engaging LEDEs:  Lyme disease: Epidemic. Disabling. Expensive. Please forward this to any and all journalists.

The facts about Lyme disease:
  • Lyme disease is the most frequently reported vector-borne illness in the United States.
  • Confirmed cases of Lyme disease have been reported to the CDC from every state, except Hawaii. (CDC, 2013)
  • Not everyone who contracts Lyme disease will develop the "characteristic" bull’s eye rash. Estimates range from as few as 27% to as many as 80%. (Literature review on Lyme.org)
  • Laboratory testing is outdated and misses at least 40% of cases, whether someone has a bull's eye rash or a chronic case of Lyme disease. (Rebman et al., 2014; Fallon et al., 2014; Johnson & Stricker, 1997)
  • The CDC states there are 300,000 new cases per year, but CDC-funded research suggests new cases could actually number 600,000 or more. (Hook et al, 2013)
  • More than a third of patients will fail standard antibiotic treatment and suffer chronic symptoms of Lyme disease. (Aucott [Johns Hopkins] 2013a; Aucott [Johns Hopkins] 2013b)
  • 1.5 million patients currently suffer from post-treatment symptoms, outnumbering the 1.2 million living with HIV. (Hook et al, 2013, SpiroChicks.com, 2014)
  • Two-thirds of chronic Lyme patients changed their work status to accommodate their illness: Forty-two percent stopped work, and another quarter reduced their work hours or modified their job to accommodate their illness. (Johnson, 2014)
  • Most insurance companies refuse to pay for curative treatment after 30 days.
  • Most Lyme patients must seek non-covered care.
  • 43% of chronic Lyme patients spend more than $5,000 out-of-pocket per year for non-covered care, compared to 6% of the general population. (Johnson, 2014)
  • Patients with chronic Lyme disease feel unrested 20.3 of 30 days a month, “significantly exceeding the number of unrested days reported by those with cancer (12.5).” (Johnson, 2014)
  • Quality of Life studies show patients with chronic Lyme score worse than patients with diabetes, heart disease, depression, osteoarthritis, or rheumatoid arthritis. On a measure of fatigue, patients with chronic Lyme scored considerably worse than patients with ALS or MS. (Klempner, Cameron, Fallon, Krupp and others, 1994 – 2012; ILADS Guidelines, 2014)
  • Eleven percent of Lyme disease patients will be rendered disabled by post-treatment symptoms, creating at least 30,000 new disabilities per year. (Aucott et al, 2013)
  • The direct and indirect costs of Lyme disease may approach $100 billion per year. (Spirochicks.com, 2014; updating Maes et al, 1998)
  • Lyme disability payments alone could cost taxpayers almost half a billion per year. (Spirochicks.com, 2014)
  • Lyme disease makes up a half percent of the NIH 2014 infectious diseases budget. HIV/AIDS accounts for three-fifths of the $5 billion infectious diseases budget. (NIH, 2014)
  • There are about 13,000 published studies on Lyme disease, about the same as for acne. There are more than 350,000 papers on HIV or AIDS and around 3 million papers on cancer. (PubMed, 2014)
For live updates on the NYT Lyme vigil, here are links to the Facebook page:
https://www.facebook.com/Lyme30000 and
https://www.facebook.com/events/1475202696060072/ (event page)
Alix Mayer, MBA worked in corporate research for Fortune 100 companies until becoming disabled by late Lyme disease. She is happy to report she is substantially recovered. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary, Blood Berries or Butter about health mavericks who didn't settle for the top-down approach to healing. Her story is featured in Gifted and Sick, by A.M. Runyan, now available on Kindle. She is co-authoring an academic book on Lyme disease and works as a health coach and consultant to non-profits. Contact Alix: spirochicks@gmail.com

Friday, May 2, 2014

Founding of SpiroChicks: The Backstory

Did we ever tell you how SpiroChicks was founded? It's our fifth birthday!

Kim Kooyers and Alix Mayer co-founded SpiroChicks in 2009 after Kim posted on Facebook that she was buying an infrared sauna. Alix immediately instant-messaged Kim asking, "Do we have the same thing?" Infrared saunas are frequently recommended to Lyme disease patients as a way to detox and make antibiotics work more effectively, so it was pretty obvious to Alix what Kim's new diagnosis was.  Of course, Kim immediately confirmed that she had just been diagnosed with Lyme disease.

Elizabeth Edwards with Silicon Valley Mom Bloggers, 2007
Alix and Kim first met while reading each others' articles on Silicon Valley Moms Blog, a collaborative blog about being a mother in Silicon Valley. We met in person in 2007 when Elizabeth Edwards, the wife of Presidential hopeful John Edwards, had a private meeting with sassy select Silicon Valley Mom Bloggers. It was then we realized we were both struggling with yet-undiagnosed illness.

Once we were both in Camp Lyme, we wanted a place like Silicon Valley Moms Blog where many authors could share their personal journeys with Lyme disease. We modeled SpiroChicks after that blog and began inviting other authors. We were far from experts, so we decided we would focus on the hardships and humor of living with Lyme disease.

The name SpiroChicks is derived from the name of the infectious organism in Lyme, the spiral-shaped bacteria called a spirochete. Chicks needs no other explanation, but Alix was thinking of her late mom, a pioneer in wind energy who was responsible for forcing Colorado's utility to build the first wind farms in the state. That's not a non-sequiter. Alix's mom referred to herself as a Wind Chick. So the word chick felt right, and it blended well with spirochete. We are also fond of neologisms since the URLs always just happen to be available.

As of 2014, we and our writers are more infrequent in posting articles at SpiroChicks, but we are more active than ever in our offline lives. Alix and Kim are substantially recovered, as are many of our other writers. Some of our writers are not yet recovered and we think of them every day.

Alix is co-authoring an academic book about Lyme disease. Kim is pursuing fiction writing.

Founding of SpiroChicks permalink.

Monday, March 17, 2014

Tuesday: Lyme on Diane Rehm Show

The Diane Rehm show, guest-hosted by Frank Sesno, will do a great show on Lyme disease Tuesday, March 18th at 11:06 a.m. EST/ 8:06 a.m. PST. Listen at the above link online or live on your local NPR station. Go to http://www.drshow.org, and click on “Listen to WAMU” (on the top right of the page).

Guests will include:
  • Dr. Paul Mead, chief of epidemiology and surveillance, Lyme disease program at Centers for Disease Control and Prevention.
  • Dr. John Aucott, assistant professor of medicine, Johns Hopkins University School of Medicine and clinical researcher, founder and president, Lyme Disease Research Foundation.
  • Monica Embers, PhD, Tulane National Primate Research Center.
  • Pamela Weintraub, senior editor, Discover Magazine and author of "Cure Unknown."
Here are the two ways to contact the show with questions while they are on-air:
Alix Mayer, SpiroChicks co-founder, is happy to report she is substantially recovered from Lyme disease. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary about health mavericks, Blood Berries or Butter.  She is co-authoring a book on Lyme disease and works as a health coach and consultant to non-profits.

Thursday, March 13, 2014

Lyme Disease May Cost $90 Billion Per Year

by Alix Mayer, Spirochicks Co-founder

This number is going to shock you. Lyme disease may cost taxpayers, insurance companies and patients $90 Billion per year in the United States. Is this a real number? Well, yes and no. This week I located the 1998 Lyme disease Cost-of-Illness study funded by SmithKline Beecham (SKB). The study was conducted to justify the introduction of the ill-fated Lyme vaccine. At that point, the authors calculated that Lyme disease costs society and third party payers $2.5 Billion per five-year period, or $500 Million a year.

I deconstructed the study's analysis and updated the assumptions for 2014 to come up with a present value of $90 Billion per year in Lyme disease costs. It includes direct costs, indirect costs, and the amount patients pay out-of-pocket.  Let me take you through it.

First it's important to know what's included in the SKB study's $500 Million per year number. The authors did a comprehensive job calculating the direct and indirect costs of Lyme disease. For direct costs, they analyzed two insurance databases for Lyme-related costs of outpatient visits, hospitalizations, ER visits, home health care, and prescriptions. The authors also calculated indirect costs of long-term sequelae of Lyme disease, taking into account flu symptoms, cardiac, musculoskeletal, neurological, and dermatological symptoms. They even broke those costs down into work-loss days, bed days, restricted activity days, and costs associated with taking care of children sick with Lyme. I applaud them for doing a bang-up job on these indirect costs.

The authors used an incidence rate of 4.73 cases per 100,000 people, which was the average for the mid- to late-1990s. Thanks to the CDC's new estimate of annual Lyme disease cases, I will update that number to 100 in 100,000 in my calculations below.

Their assumptions also included a 95% probability of successful treatment in Stage I Lyme - that period where someone was recently bitten by a tick and might have a bull's eye rash. When I update their analysis, I'm going to use (conservatively) an 80% probability of successful treatment to reflect two datapoints: the CDC's estimate of 10 - 20% treatment failure and the most recent data from John Aucott's SLICE study at Johns Hopkins, suggesting more than a third of patients fail treatment.

Let's start with 1998 when the SKB study found that Lyme cost $500 Million per year in both direct and indirect costs. Keep in mind that I have no delusions that I'm actually re-doing the authors' study. Imagine we're sitting together in a coffee shop doing informed calculations on a napkin to approximate what Lyme might cost today if the SKB study were updated. Here we go:

First, I wanted to correct the incidence rate, so I calculated that today's rate of 100 per 100,000 was 21.14 times higher than the 4.73 incidence rate used in the study. That takes us up to $10.5 Billion per year.

Next, I corrected for the larger population. We have almost 16% more people now than in 1998, so that takes the annual cost up to $12.2 Billion per year.

Next, I needed to correct for inflation. So I used this handy inflation calculator from the BLS and, wow, things are a lot more expensive today. $18.3 Billion per year.

Finally, thanks to Dr. John Aucott's gold-standard research into post-Lyme syndrome, we know that more than a third of patients with have Post-treatment Lyme Disease Syndrome. As I mentioned earlier, the CDC thinks post-treatment symptoms are less common, around 10 to 20%. Either way, the treatment failure rate is not actually 5% as the SKB study authors estimated, it's 10 to 39%. I'm going to say the failure rate averages 20%. Since that rate is 4x the rate used in the SKB study, and the CDC stated in another published study that incidence and sequelae are the two biggest drivers of the cost of Lyme, I'm going to quadruple my last number to get $73 Billion.

Phew! Sounds like we're done, right? In most illnesses, we would be done. But Lyme is special. People with chronic Lyme are probably yelling at their computer right now. What about all our out-of-pocket costs since insurance will only pay for a month of antibiotics? Well, I'm happy to say that courtesy of the studies the CDC used to re-estimate the number of people with Lyme, I can calculate that too. Recall from my previous article discussing the results of the CDC's HealthStyles survey, we found that 1.5 million people could be suffering from chronic Lyme. Let's use that number.

Let's say these 1.5 million people who suffer from chronic Lyme pay an average of $12,000 out-of-pocket per year in medical costs. Note that I'm being super-conservative here since I know IV antibiotics can cost thousands a month. My estimate of out-of-pocket costs adds an additional $18 Billion.

And we're there. $73 Billion plus $18 Billion equals $91 Billion. Sorry about the billion-dollar rounding error in the title. What's a billion dollars, anyway? A lot of suffering, a lot of disability, a lot of lost work, a lot of bankruptcies, a lot of foreclosures. Oh, wait, I didn't calculate bankruptcies and foreclosures... however, I'll spare you any other calculations and stop there.

My friend Ashley made some Lyme T-shirts that said "Little Tick, Big Problem." Big indeed. $90 Billion big. I wish the ticks could pay our bills.

Other people might interpret this data differently. If you take your own swag, please publish the link to your analysis in a comment below.


Alix Mayer, MBA worked in corporate research for Fortune 100 companies until becoming disabled by late Lyme disease. She is happy to report she is substantially recovered. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary, Blood Berries or Butter about health mavericks who didn't settle for the top-down approach to healing. Her story is featured in Gifted and Sick, by A.M. Runyan, now available on Kindle. She is co-authoring an academic book on Lyme disease and works as a health coach and consultant to non-profits. Contact Alix: spirochicks@gmail.com

Tuesday, February 25, 2014

CDC's Survey Results Suggest 1.5 Million Suffer Chronic Lyme Disease

by Alix Mayer, Spirochicks Co-founder
Edited: August 31, 2014


[San Francisco, CA] In 2013, the CDC increased the Lyme disease incidence rate by a factor of ten. The CDC now estimates there are 300,000 new confirmed cases per year, whether or not the cases are actually reported to the CDC. The results of the CDC-funded studies that led to the re-estimate instantly make a myth of the common mantra that "Lyme disease is hard to catch and easy to treat." In fact, the results suggest a massive public health crisis, as the data indicate that treatment failure rates may be quite high, leading to 1.5 million chronic Lyme cases, and rendering 58% of chronic Lyme disease patients unemployed.

The new 300,000 incidence rate is based on the results of recent studies commissioned by the CDC. In one of the studies, the CDC licensed questions about Lyme disease in the 2009, 2011 and 2012 HealthStyles survey. (Hook et al, 2013) HealthStyles is a consumer health survey fielded among thousands of respondents, with the statistical power to extrapolate results nationwide.

The HealthStyles data actually suggest the annual incidence rate could be 600,000 or more, but when combined with two separate CDC studies -- a laboratory diagnostics study and an insurance database chart review which reflect more narrow diagnostic criteria -- the CDC likely selected the more conservative 300,000 rate. None of the studies took into account the high rate of false negatives on standard laboratory testing, which is thought to miss 44% of Lyme cases. (Johnson & Stricker, 2007) False negatives lead to misdiagnoses, long delays in treatment, and an increased chance of chronicity.

Regarding how many people have been diagnosed with Lyme since the start of the epidemic, in 2012, almost 1% of HealthStyles respondents (0.9%) agreed they'd "ever been diagnosed with Lyme disease," suggesting almost 3 million U.S. residents have ever received the diagnosis.

In the 2011 version of the survey, half a percent said "I suffer from chronic Lyme disease," suggesting 1.5 million people may be suffering with a chronic form of Lyme disease, outnumbering the roughly 1.2 million Americans living with HIV infection. The most common symptoms reported by those with chronic Lyme were: fatigue, muscle aches, joint swelling, and numbness/tingling.

It's tempting to combine the 2012 "ever diagnosed" number with the 2011 "chronic Lyme" number to yield a treatment failure rate, however, since the CDC didn't report on the same questions year-over-year, we cannot reliably combine the 2011 and 2012 data. These figures do suggest treatment failure is very common, so let's look at the rate of chronicity illustrated by a different set of HealthStyles questions, then compare that to research from Johns Hopkins University.

Thursday, February 6, 2014

KPFA Drive: Horowitz on KPFA Today at 5PST/8EST

I just received the following from my LLMD about KPFA interviewing Dr. Horowitz today at 5pm PST/8pm EST. Richard Horowitz MD is the author of Why Can't I Get Better?  Donate if you can. Either way, it sounds like a great show to listen to.


KPFA is airing another Lyme disease show tonight interviewing Dr. Richard Horowitz. Dennis wasn't going to air it until next week but was so excited about the pre-recorded interview that he decided to air it early. 

KPFA is in the middle of their fund drive and on the last Lyme show they came out short of their goal of raising $3000 (they only raised $2800). Dennis is really going all out for us dedicating this much time for the series and we need to justify the air time to the general managers and show that we appreciate the coverage and want more.

I know many of us are struggling just to pay for treatment and basic survival but even if people can give $20, $25, $50 or more it will add up. You can also do a monthly payment plan to pay off a larger donation of $100 or more. Or one or more people can band together and offer a matching fund of $800 or $1000 to help encourage others to donate. The donation is tax deductible.

If possible, donate during 5 to 6pm PST (8 to 9pm EST) so that the station knows that you're donating in support of the Lyme series. But you can also donate online or call later and let them know you are donating because of Dennis's coverage of the Lyme series.

You can listen online at: kpfa.org.


Thursday, July 11, 2013

Living it up

Cross-posted to gratitude365.

Over the years, I've written about my suffering and my practice to be grateful in the in the midst of it. (If you’re interested in any of that past history, click on the “Kim” link under "Labels" at the right.) But this post is about healing. And yes, there’s a huge gap in my posting (like two years). There’s several factors that contributed to that, but ultimately, I think when I started feeling better, I started to live more and ruminate less.

In a way, I think I’m making up for lost time. In fact, I worry that Facebook friends think I’m a show-off posting pictures of myself waterskiing, out dancing, or striking a yoga pose half-way up the climb to Yosemite Falls. And to that, I say, “so be it.” Five years ago, I wasn’t entirely sure I was going to live to age 40 and if I did, I couldn’t have possibly imagined it with the physical ability and brain function I have now. So yes, I am profoundly proud of these moments.

Mostly, I am astonishingly grateful. It took a village to bring me to this place of recovery. To my Lyme doctor, acupuncturist, chiropractor, physical therapist, LENS practitioner, yoga instructor, dear friends--both the Lymies, who “get” everything, and the non-Lymies who tolerate, if not appreciate, my eccentricities--and my family: Thank you. Thanks for believing me, supporting me, accepting me. You have all shared a piece of your light with me and helped to bring back my flame.

I’m so glad I didn’t give up in those dark, dark moments. Where the only things keeping me in this world were a baby and a toddler who needed a mother; a husband whose loyalty and capacity to love me was beyond what I could have ever imagined; and the nagging belief that I haven’t fulfilled my life’s purpose yet.

And no, I'm not "cured," I'm still on medication, watch everything I eat and the thoughts that cross my mind, but I feel myself coming back. I really can’t say it any better than Dana, who was featured in the documentary Under Our Skin: “After ten years of Lyme, I’ve cleaned up and simplified my life. I have retreated deep into my soul and now I stand guard for everything that goes into body and mind. Whatever I have lost to Lyme I have gained ten-fold into my spirit. Life is coming back to me and I am so grateful.”

Thursday, September 6, 2012

Healing and fighting...

In May, I finally fell through the doors of an LLMD, one I had chosen, one I knew would help me. And he has been. I am more functional every day. I am immensely grateful. Right now, I am also immensely angry.  I learned from a friend and fellow patient of his today that the records of all his Lyme patients have been subpoenaed.  I am frightened for him. He gives so much, from his small office. I am worried for his staff. I am, of course, worried and frightened for myself. And I feel violated. *My* records are in there. *Mine.*  My friend's, too. Maybe yours. I wish I knew how to help him. I wish this disease and the bizarre agenda that comes with it did not render us all, patients and caregivers, at some level, powerless. No pithy ending here, just anger and frustration.  This is wrong.

Tuesday, June 5, 2012


 A post from SpiroChicks contributor Lyme is Real.

I've been wrestling with writing, missing the May deadline for a Lyme Awareness post. Yesterday our Border Collie cracked the writer's block.

A family of rabbits lives in our backyard, darting and hopping; very playful. Giving the illusion that Richard Adam's Watership Down's warren has sprung straight from the pages into our yard. Our Border Collie has a different take. To Marley, it is more like Cynthia Rylant's Mr. Putter & Tabby Feed the Fish.where Tabby, is driven crazy by goldfish. Yesterday, Marley flew into a frustrated frenzy, shredding every piece of bedding down to and including my side of the mattress. Fortunately, no quilts were damaged, but UGH! Suffice it to say, between medical expenses, student loan payments and life in general, new bedding and a mattress are not in the budget. So what to do beyond providing love and reassurance to one very remorseful BC who just happens to be draped over me as I write?

Well, there are two traits that come in handy if you're going to survive Lyme. You must be adaptable and a great problem solver. At bedtime, my husband carefully laid out the sheets, making sure the tears didn't overlap and fell quickly asleep. Sewing machine repairs could wait, but what to do with the rather large hole in the mattress on my side of the bed?

Wool roving? I replaced a piece of mattress, stuffed roving around it, then used a pad from a brace to hold it all in place. Good enough. Just as I drifted off to sleep, it hit me that the shreds of fabric were a simile for our lives.

Life as we once knew it in shreds or we're holding on by a shred? A bit of each I think. Dear ones facing cancer and congestive heart failure. Shared grief from recent losses. On the Lyme front, our nine year old is adjusting to life with a shunt and the remaining syrinxes in her spinal cord. Painting, singing and writing bring much joy. She has loved rejoining her classmates at school. Our 14 year old recently developed complex regional pain syndrome after a knee injury. So painful and debilitating! Music remains her solace and inspiration. As one world opens up a bit, the other shrinks. The ebb and flow of chronic illness.

A friend recently asked if I was keeping my head above water? I laughed, "Nose and lips."

Daily antibiotic infusions keep me afloat. Infusions to knock down mastoiditis, a stubborn bone infection left over from my Lupus days. I tire easily. A sense of humor, though sorely tested, hangs tough, but please pardon me if I laugh too loudly. The sense of humor is a bit strained and the left ear still messed up, but as our youngest says, "Welcome to my world."

Who can argue with that?

Yes, blankets are torn and our lives in disrepair, but shining moments keep us moving forward and our spirits alive. So here is my May service announcement in June. As the tick populations grow and spread and scientists warn of a perfect Lyme storm brewing, please learn what you can about Lyme disease. Not all ticks are infected with Lyme, but one that is can change your life forever. When I think of the havoc a tiny deer tick caused in our family's lives, it's humbling. Remember, a bull's eye rash is a definitive sign for Lyme, but it shows up in a small percentage of cases. Unfortunately, the tests for Lyme are often unreliable. Lyme disease should be a clinical diagnosis. A bull's eye rash or a summer "flu" are warning flags. Adequate treatment at the onset of infection can spare years of suffering later. Closing with best wishes from our family to yours!

Thursday, May 3, 2012

A balance of evils

The news cannot have escaped you: ticks are expected to have a banner year.  I’m sure this news thrills you as much as it thrills me.  I have dogs and cats who go outside. I like to go outside myself.  I know that there are infected ticks in my own backyard (a neighbor was infected by a tick in the park across the street last summer).  So, as some people cast their minds towards whether it’s time to replace that grill and whether there’s still time to expand the back deck, I’m thinking about chemicals. Sum-sum-summer-time, you know. 
Now, reasonable minds may differ on this. Mere repellants do not appeal to me. In my mind, no tick should live to bite another day. Permethrin is, then, should be my chemical of choice. It's what's recommended as being a safer choice than a potential tick bite.  So my analysis is easy and I'm all set, right?  As with all things Lyme, it's never that easy. 

Permethrin has some issues.  It's a neurotoxin. Probably. Also, it probably causes cancer. But the EPA hasn't really looked into that, so it's hard to say. It is highly toxic to aquatic critters (and probably plants, but that's not really been studied all that much either).  It's highly toxic to honeybees and apparently it will kill my cats.


My neurological system is already plenty compromised, thanks. Cancer kinda runs in my family.  Permethrin, then, may not be the best option for me. 

I'm also pretty sure that another tick-borne infection would do me in, so I reluctantly must consider mere repellants.  Picaridin is the new, cool tick repellant kid on the block. It seems pretty okay, except that it may be toxic to freshwater fish.  The World Health Organization feels it does not present an unacceptable health risk.  I'm not sure I find that a glowing endorsement. Every natural herbal option I've tried has, on me, acted as insect perfume.  Bugs dig me, especially with some fresh sauce. 

I want the perfect chemical. I want something that is only toxic to ticks. Okay, and mosquitoes.  Fleas would be nice too. But not my cats. Not innocent fish, or algae.  And not, you know, me. I want a toxin that makes moral judgements and decisions, that can be smart, agile. It's emotional decision making, I know. I think I'm allowed. What I want, indeed, what I feel I deserve, and you deserve, is a toxin as smart as borrelia burgdorferi and its cousins. We get smarter about cancer every day. We could get smart about insect-borne diseases. But we don't. Still. So I will weigh my options and make the best choice I can. it will not be the best option we are capable of producing--of that, I am certain. 

Sunday, April 29, 2012

A Compost of "No"

The life of a chronic Lymie is often a parade of the absurd. For instance...At the end of March, I quit my job. At the same time, I applied for more life insurance, particularly with the notion that I would be giving up the insurance provided by my now-former employer.  Of the things I've been worried about, whether I would actually get life insurance was not one. I mean, my health insurance company has trouble believing Lyme *exists*...surely I wouldn't be denied on that basis. Ha.

 I finally found an insurance company that takes Lyme seriously. No, don't celebrate. USAA has "postponed" a decision until my Lyme is "resolved." Seriously. "Because of potential complications." What does that mean? "We want you to be symptom free." Yeah, well, me too. I'd especially like my brain back (That old saw "Of all the things I've lost, I miss my mind the most"--not very funny anymore.). The layers of irony are astounding. My health insurance company doesn't think I'm sick. My life insurance company apparently thinks I might die. The common theme, of course, is that neither wants to take on the financial burden of me.  Because I have chronic Lyme, which the CDC says doesn't exist. Which shouldn't make me a financial burden. Right?

The politics of Lyme/tick-borne-disease/insect-borne-disease diagnosis and treatment are layers of quagmire, sandwiched with horse manure, sprinkled with a few bright stars. It ought to be fabulous compost, don't you think? And yet, so far, my garden is not sprouting roses. Briars, yes. And, when I have the energy for it, anger.

I was too flabbergasted to do more than splutter in disbelief at USAA. Yelling wasn't going to do any good anyway.  I'm lucky--I was able to convert my employer-provided policy, at exorbitant cost, but at least, should the Lyme, or a bus, take me out, my family has some coverage.  I think the "sorta denial" I received is an indication that chronic Lyme is gaining recognition. At least, that's the positive spin I choose to put on it.

Tuesday, March 6, 2012

Chronic Lyme Goes Mainstream

By Spirochicks contributor Ozone Amanda

Another vindication for Chronic Lyme!

Sorry for not having the time to write a full review of the below Washington Post article, but I think it speaks for itself. The writer sounds so cautious and trusting of hierarchical medical authorities like NIH and IDSA (at least at first), that I think this article may even be relatable to skeptics of Chronic Lyme. I especially appreciated the author's call, at the end of the article, for recognizing and researching health issues that cannot be seen or clearly, verifiably measured. The reaction of the epidemiologist and her friend's first doctor--that it's all in your head or part of an autoimmune post-lyme reaction--is far too common and leads many ill people to doubt themselves, which most likely suppresses their immune systems and causes them to fall further into illness.

To read the article, navigate to: http://www.washingtonpost.com/national/health-science/the-doctor-diagnosed-chronic-lyme-disease-but-many-experts-say-it-doesnt-exist/2012/02/06/gIQA4aMHtR_story.html

Heal on!

Friday, October 21, 2011

How do you know?

posted by Lyme is real, a SpiroChicks contributor

How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!

Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."

Things like how to add or subtract.

We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.

A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.

The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.

This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."

She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."

When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"

She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.

Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.

In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"

Monday, October 17, 2011

Hospital Tales

By Candice, Spirochicks contributor 
Originally posted on Infectiously Optimistic 


Thursday evening, a thin partitioning sheet separated my gurney from the gurney just a foot from mine. My neighboring hospital bed was empty upon my admittance to the Emergency Department, but a few hours into my stay, I watched the shadow of a new patient settle in, and listened to the worried voice of their accompanying loved one, intermittently interrupted by the intrusive sounds of inflating blood pressure cuffs and beeping machines. As the triage nurse brushed by the curtain separating us, the sheet rippled as it caught the air of the nurse’s brisk wake, and for a fleeting moment I was able to harbor a glimpse of the two beside me. The patient laying in the hospital bed was a pale elderly woman, her silver-haired husband sitting in a chair by her side. As time elapsed, she was wheeled in and out of the area for a number of tests, her husband always shuffling in tow of her traveling bed. Eventually, the couple was visited by neurologist clad in a crisp white overcoat, who informed the elderly woman that she had suffered a small stroke. She had lost the use of one of her arms, but she’d be treated and monitored, and she’d be okay. The doctor proceeded to educate the couple about the further neurological testing that would be required and the rehabilitation that would ensue in the following weeks as they tried to help her regain her strength and the use of her impaired limb. I listened to the thick silence as the news sunk in. Finally, the woman replied:

“But how will I do my hair?”

I imagined that she was referring to her inability to use the arm that she naturally relied on. I listened for her husband’s response. To my surprise, I almost sensed a smile behind the tone of his voice. I watched the shadow of his raised hand as he lifted it to gently pat his wife on the top of the head.

“Oh honey, I’ll brush your hair. I’ll put your curlers in for you too.”

Now that's love.
Illness has a way of stripping life of glamor, glitz, and the nuances that blind us to what lays before us. Illness exposes weaknesses while unearthing strength, and reveals what is real and what was merely smoke and mirrors. It quakes a life until its cracks widen and what is feeble falls away, and leaves what is relentlessly real standing clearly in front of us. Living life with an illness has proven to be one of the truest ways to live and has blessed me with the opportunity to witness raw courage, true compassion, and authentic love. For that, I am grateful.

Monday, September 26, 2011

Tidbits From Practitioner Byron White's 9/04 Interview

By Candice, SpiroChicks Contributer

On September 4th health practitioner Byron White, the creator of the increasingly popular Byron White Formulas, gave a live Q&A session as a guest on Blog Talk Radio. The interview was nothing short of phenomenal. Byron White's infinite wisdom and insight was remarkable, as well as his compassion for those suffering from Lyme Disease and chronic illness.

Byron White has been treating those with chronic illness for over 37 years. He specializes in a number of alternative and naturopathic means of treatment, but has also been involved in pivotal medical research. The research he has taken part in focuses primarily on finding natural means of restoring health. In the 1980's, he suffered with Late Stage Lyme Disease and Multiple Chemical Sensitivity himself, which lead him to his research that resulted in the development of 27 different herbal formulas. Some of these formulas, such as A-Bart, A-Bab, and A-L Complex,  have become the leading choice in alternative Lyme Disease treatment in the country.

What immediately struck me about Byron White was his refreshingly holistic view on chronic illness. Just as everything else in nature, he views the body as a layered system. With each detrimental layer that is peeled away, the body gains strength. He believes that eventually, the body will take over, and clear the remaining infection and toxicity itself. Every body is unique; not every Lyme patient requires a protocol focused on the eradication of the Lyme bacteria. Their surface layer may be heavy metals, fungus, parasites, or a virus. Once the first few layers are removed and the body begins to unwind and the infectious or toxic blockages are released, it may be able to take care of the rest itself. With both his knowledge and his faith in the strength of the human body, Byron White exudes hope. The following are tidbits of the wisdom that he shared.

Healing Chronic Illness 

-A healthy body is constantly dealing with pathogens. It isn't until one of these pathogens finds a weakness and overtakes the immune system, creating an imbalance, that we become ill. Treatment is therefore necessary in order to bring the body back to a strong state of balance.

-Our parasympathetic nervous system is our healing system. When an infection takes over in our body, our sympathetic nervous system responds and we are sent into "fight or flight" mode. We can't survive as human beings when we are constantly running, therefore it is necessary to balance the sympathetic, parasympathetic and autonomic nervous system so the body is capable of of balance and healing.

-When your sympathetic nervous system is in overdrive, it's as though you have your foot on the gas pedal while your parasympathetic nervous system is laying dormant. Eventually, your sympathetic nervous system begins to burn out. Therefore, overstimulating an already stimulated sympathetic nervous system with things like antibiotics, drugs, and immune boosting protocols is not advantageous. It's about balancing the body, not stimulating it.

-Many times, a patient has autoimmune or over-activity in one portion of the immune system, and suppression in the other. Therefore focusing on boosting the immune system could be detrimental, much like stimulating an already overstimulated sympathetic nervous system. When people think infection, they automatically think of "suppression". That isn't always the case.

-Conditions such as Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivity are just labels for symptom sets. Every symptom has a cause. Yet, the same symptom in two individuals could have a different cause in each. Therefore, not all Chronic Fatigue patients have viruses, and not all Fibromyalgia patients have Lyme. These symptom sets are often neurological in nature, therefore they could be the result of a number of different causes that result in neurotoxicity such as mold poisoning, parasites, or even pesticide exposure.

-Autoimmune Diseases, like Lupus, are also labels. Lupus is a word that represents and autoimmune response that can be triggered by a number of things. All physiological responses have causes. The cause could be anything from a virus, bacteria, fungus, toxin exposure, heavy metal, or DNA related issue.

Bioresonance Testing

-Blood tests are most often an unreliable way of determining the cause of illness. They are typically falsely negative, and do not indicate what is priority for treatment in the body.

-You may test positive for a pathogen, but you may not be ready to treat it or it may not be on the surface layer in your body. The pathogen or toxin on the surface layer is the issue that the body requires addressing first. If it is left unaddressed, it could prevent the healing of the remaining layers. This is often the reason why one can chelate heavy metals for years but still have heavy metal toxicity; a different issue was on the surface layer. This is where bioresonance testing is useful. It can be used to reveal which pathogens may be causing symptoms (that blood tests often miss), and which issues are priority in treatment.

-Byron White uses bioresonance testing that is not machine based. He uses a combination of filters and kinesiology to specifically test for issues in the body. He is able to tests specific layers in the body, as specific as the DNA in the left eyeball, to see what is resonating in that particular layer of the body. He finds that the human machine, because of its sensitivity, is the most accurate form of testing. He has used it for years and has had much success. He now trains practitioners in the process.

Lyme Disease

-Treatment doesn't have to be a long and protracted process.

-Byron White treated a Lyme patient who also had cancer 40 years ago, and was given a drug for treatment. It was after cancer treatment that she went on to develop arthritis and a number of chronic symptoms. He discovered that the primary cause of her symptoms was the drug that remained in her system for over 40 years. He created a homeopathic to treat and detox the toxicity of the drug, and 3 weeks later she bounced back. Her symptoms were eliminated, even after suffering from these symptoms for decades.

-There are no blood tests for Lyme Disease to tell you whether or not you are "cured". Some pracitioners believe that you can never fully eradicate Lyme, and the best that you can do is get the patient to the point where their immune system can keep it in remission. Byron White disagrees; he believes that the body can fully eradicate Lyme. If this isn't possible in the patient, his second best scenario would be to push the Lyme into dormancy and strengthening the body enough to hold it there. But Byron White believes that Lyme isn't always as difficult to treat as many believe. Healing is possible.

-The focus of treatment shouldn't be about pounding away at an infection with different treatment modalities, but should be listening to the body and what it needs to heal. The body is designed to defend against and eradicate pathogens, therefore if strengthened and balanced, it is capable of dealing with chronic infections.

-You can have a pathogen, including Lyme Disease, that dies but stays in the tissue for years and the resulting toxicity causes symptoms.

-Generally speaking, "Post Lyme Syndrome" doesn't exist. Typically, if it isn't Lyme that's causing symptoms anymore, it is a different pathogen causing symptoms.

Bacteria, Mycoplasma, Viruses, Fungus, Parasites

-When Byron White did his original research as he traveled and tested across the United States, he found a number of pathogens that frequently came up in patients. One of them is not often talked about, Powasson Virus, which is a virus that is transmitted through a deer tick. It is often missed because it mimics Lyme Disease.

-Other common pathogens that most often show up in patients who are chronically ill include but are not limited to mycoplasma, mold, fungus, candida, nematodes, epstein barr virus, HHV-6, Coxsackie viruses, and Cytemegaloviruses. Each has the potential to cause symptoms and imbalance just as significant as Lyme.

-The good news is that each pathogen does not need to be addressed individually. You want to view treatment as a domino process. Address the issue on the surface layer and detox the body, and your system will achieve a little more stability and balance. With each layer addressed, your body gains strength and is eventually able to pick up speed and take care of remaining layers of infection and toxicity itself, much like instigating the tip of a line of dominoes.

-In the past, when our bodies had less environmental toxicity to deal with, people would contract an infection and they wouldn't even know it. They'd come in contact with something like babesia, and they would feel sick for a few days or a week while their body took care of it. Our bodies are designed to keep us well, so the goal and focus of treatment should not be to kill all pathogens but should be to strengthen the body so it can achieve protecting us once again. Our body is ultimately our best defense.

Environmental Toxicity 

-If we didn't have as much environmental toxicity, we wouldn't have as many problems with pathogens. Environmental toxicity weakens the body, therefore it is crucial that it be addressed in treatment.

-Byron White recently developed a new formula to treat radiation toxicity due to the effects on our bodies resulting from the crisis in Japan.

Multiple Chemical Sensitivity

-Chemical sensitivity rarely stands alone. There is always a cause, but it doesn't have to be Lyme. They could have heavy metal toxicity, or they could have Leaky Gut Syndrome (colon issues), or an exposure to a toxic chemical. 

-Lyme Disease (as well as other pathogens) can cause a significant increase in sensitivity to substances, including ones own hormones. One can become sensitive to phenols, which are found in hormones in our body but can also be found in pathogens like Candida. Typically when the pathogen is eradicated, the sensitivity improves.


-Often times, symptoms arise when we become too toxic while killing pathogens, not from the pathogens themselves.

  -Typically the development of G.I. symptoms during treatment are neurological in nature, caused by the enteric nervous system, and are therefore caused by neurotoxicity. Detoxing neurotoxins can improve a number of neurological symptoms such as nausea, disorientation, headaches, mood swings, etc.

-Detoxification depends on the particular patient. Required detoxification methods, just like treatment methods, are not the same in all patients. There are situations where you wouldn't want to do colonics, detox baths, or saunas. Often times internal detoxification formulas are most effective, formulas or homeopathics that encourage the organs like the liver, intestines and the kidneys to dump toxins. It's great to then follow up with supportive external forms of detoxification for the lymphatic system such as dry skin brushing and detox baths if tolerated.

Mold Toxicity 

-Mold's purpose in nature is to break things down and return it to the earth, so it has a tendency to work in a similar fashion inside of us.
-When treating a patient, look at their environment first. A patient can even do this themselves. You can purchase mold plates and set them out for 45 minutes, then close them and let them percolate for about a week. The development of more than 4 colonies of mold on the dish is problematic.

-If you have mold in your house, it is extremely difficult to get better.

-Once the environment is cleared, mold is almost always up in the patient's sinuses. This must be addressed. There are companies nebulizing antifungals for this purpose.

-You want to stop feeding the mold and fungus inside of your body by cutting out sugar and gluten from the diet and limiting carbohydrates.

-You typically want to use a binder to bind the mold toxins. There are prescription binders, such as cholestypure, but he never uses them as he has found that they cause problems in the liver and the gallbladder. There are natural means to bind and detox mycotoxins.

-Desensitizing the mold is often necessary as well once the body is detoxed to prevent reactivity. This can be done with a practitioner who is trained in homeopathy.

-Prevent mold growth in your environment by monitoring humidity. It should be between 35-40%. Fish tanks are a large source of humidity. A humidifier may be necessary. Also be aware of mold in drapes and household items after cleaning up the home.

Byron White Formulas and Byron White's Website

-Byron White does not use grain alcohol in his formulas. Grain alcohols are potentially problematic in many patients, as many with chronic illness are sensitive to grains, especially glutenous ones. Corn alcohol can also pose a problem because the majority of corn in our culture is genetically modified or treated with pesticides. Byron White Formulas are comprised of organic pesticide-free grape alcohol and anywhere from 7 to 17 herbs.

-Each formula is made by hand. Both industrial machines and heat sealing are entirely avoided in the production of the formulas to avoid petrochemicals and heat compromisation. Absolutely everything is done by hand.

-There are three components to each formula: a historic component, a scientific component, and a bioresonance component. When he fell ill, he used his background in herbology to explore which herbs were historically known to treat pathogens. With bioresonance testing, he found that when the herbs stood alone, none of them tested well against Lyme. This lead to his scientific research and the development of potent formulas that create much great physiological shifts with just a few drops.

-Your G.I. tract begins in your mouth, so the formulas begin working in the mouth and continue to work as they travel down your esophagus and into your intestines.

-They work in concert with your body, and work with various organs in your system. For example, one of the herbs used in some of the formulas is gao tang, which targets Lyme and co-infections but also increases serotonin uptake in the brain. This leads to manufacturing serotonin in the gut, a process that typically happens at night. This is beneficial for many Lyme patients, since many struggle with insomnia, making it difficult for the body to successfully maintain proper levels of serotonin and other crucial neurotransmitters.

-Many of the formulas also include cyst busters, which prevent the development (and aid in the eradication of) of the cyst form of the targeted pathogens.

-The formulas are extremely potent and powerful, and cannot be used without the guidance of a practitioner. Practitioners can email Byron White to inquire about training in the use of the formulas and also in bioresonance testing at ByronWhiteFormulas@gmail.com.

-Practitioners may also call and inquire about specific cases, and will most often receive a response that same day. Byron White also holds teleconferences with doctors in need of assistance.

-The Byron White Formulas website can be used by patients to find a practitioner near them who is trained in using Byron White Formulas: www.byronwhiteformulas.com/

Thank you Byron White, for your wisdom, compassion, research and dedication to the work that you do to help us achieve wellness. Thank you for treating us as individual people, rather than a disease. Your holistic view on healing is not only enlightening, but it holds a vast amount of promise and hope. I know that I can speak for many when I say that we look forward to the future of Byron White Formulas and your research, and the powerful effect that it will have on medicine and the treatment of chronic disease.

Monday, August 8, 2011

What To Eat When You "Can't Eat Anything" Part 2: Recipes, Tips and Tricks

By Candice, Spirochicks contributor 
Originally posted on Infectiously Optimistic 

For Part 1 of the article, which includes information on food allergies, leaky gut syndrome and rotation diets, click here

The following is the promised collection of 24 food allergy friendly and rotation diet compatible recipes, along with helpful tips and tricks to get you started! Please remember that this is a loose example of a rotation diet and is meant to inspire you to create your own, based on your personal sensitivities and needs. Don't be afraid to tailor recipes to suit you and your unique body.



Day One: 

Sketch Free Vegan Eating's Sweet Potato Vanilla Patty Cakes 

Day Two: Affair's of Living Coconut Carrot Mash with Bacon or Ground Beef and Collard Greens
Day Three: Teff Porridge  
Day Four: Diet Dessert n Dog's Grain Free Porridge (personally, I am allergic to walnuts so I used sunflower seeds, and did not include a fruit)

Day One: 

Affair's of Living's Shamrock Shake

Day Two: Fit Daffy's Coconut Apple Pudding
Day Three: Nourishing Meal's Pumpkin Puree and Elana's Pantry's Oven Roasted Broccoli inside of Sketch Free Vegan Eating's Brown Rice Tortillas 
Day Four: Gluten Free Cat's White Bean Dip with Gluten Free Day's Flat Bread (also works well with amaranth flour, for rotation purposes)

Day One: 

Nourishing Meal's Adzuki Bean and Yam Hash

Day Two: Affairs of Living's  Socca  with The Daily Dietribe's Roasted Brussel Sprouts and Acorn Squash
Day Three: Diet Dessert n Dog's Tuscan Bean and Chard Soup 
Day Four: Simply Sugar and Gluten Free's Black Bean, Quinoa and Butternut Squash Salad (I use Millet instead of Quinoa, and grapeseed oil as dressing. Sweet peas or roasted turnips are also a great replacement for squash.)

Day One: Blueberry Avocado Smoothie (I personally use raspberries. Mmm!)
Day Two: 

Elana's Pantry  Kale Chips and Carrot Fries with Sauerkraut 
Day Three: Affair's of Living's "Seaweed Crack"
Day Four: Affair's of Living's Flaxseed Crackers 

Day One: 

Day Two: Affair's of Living Cumin Kissed Kale with added Ground Turkey Thigh Meat
Day Four: Broiled Pork Chops with Broiled Zucchini and Asparagus 

Dessert or Late Night Snack:
Day One: 

Jicama dipped in Heather Eats Almond Butter's Pumpkin Seed Butter

Day Two: Granny Smith Apple and Almond Butter 
Day Three: Wild Rice Cake and Sunbutter
Day Four: Celery and Cucumber dipped in Tahini


1. Make sure you rotate your oils and fats. I personally feel that it is safe to repeat oils throughout the day, typically up to three times. I then do not consume that oil for 4 days. Example for fat rotation (for 4 day rotation, 6 meals per day): 
Day One: Pumpkin seeds or with 2 meals, Ghee with 3 meals, Almond butter with 1 meal
Day Two: Coconut Oil with 3 meals, Olive Oil with 3 meals
Day Three: Sesame Seed Butter or oil with 2 meals, Butter with 2 meals, Flax or Flaxseeds with 2 meals
Day Four: Sunflower Seed Butter or Oil with 2 meals, Grapeseed Oil with 2 meals, Avocado with 1 meal

2. Don't over-consume brown rice. It's easy to get stuck in the brown rice rut! There are plenty of other gluten free grains and starches. Example:
Day One: Brown Rice and Quinoa
Day Two: Amaranth and Teff 
Day Three: Millet and Wild Rice
Day Four: Buckwheat and Sweet Potato

3. Beans are your friend! Example: 
Day One: Lentils and Adzuki Beans
Day Two: Black Beans and Pinto Beans
Day Three: Kidney Beans and Garbanzo Beans
Day Four: Great Northern White Beans and Navy Beans

4. Don't be afraid to venture away from chicken. Examples: 
Day One: Lamb 
Day Two: Pork
Day Three: Beef
Day Four: Turkey

5. Don't forget to rotate your spices and flavorings; they count too!

6. In order to keep your blood sugar stable, don't eat carbohydrates and natural sugars without an adequate amount of fat. To stave off hypoglycemic episodes,  be sure to consume fat and a small ammount of protein with every meal. Fruit and starches on their own temporarily spike glucose levels and cause a blood sugar crash 2 to 3 hours later, whereas protein and fats aid in maintaining blood sugar levels throughout the day. So, be sure to add a little seed butter to your sour fruits, or a little oil or butter to your gluten free grains. 

6. Simple Rules of Food Combining (for more info, click here): 
-Never combine fruits and fructose with other foods, unless they classified as a "sour" fruit. Sweet fruits are high in sugar and are naturally metabolized quickly, but when eaten with other food groups that digest much slower, the sugar is allowed to sit in the digestive tract and putrefy, therefore contributing to unhealthy levels of yeast and harmful bacteria. Sour fruits, such as granny smith apples, raspberries, cranberries or lemons, are safer to combine with other foods due to their lower sugar content and composition. Granny Smith Apples or Raspberries with nut/seed butters or avocado are great combinations. Sweet fruits are best eaten in moderation due to their effects on blood sugar and yeast levels, but when consumed they may be combined with a small amount of coconut oil or other non-protein oils and fats in order to maintain stable glucose levels. They combine very poorly with starches and protein.

-Never combine a protein and a starch (this means no meat and potatoes, chicken and brown rice, or ground beef and gluten free pasta). Protein and starches require different enzymes in order to digest properly in the stomach and the digestive tract. For optimal digestion, eat them at separate meals. Each go perfectly with vegetables and fat. Instead of a beef patty on a gluten free bun, try wrapping your burger in lettuce. Instead of meat in your chili beans, opt to cook them vegetarian style and eat them over gluten free grains.

Diet rules, restrictions, and rotation can be overwhelming at first. Most of those who are prescribed such diets are already low on energy and stamina as well, which makes approaching such treatment appear to be a monumental feat. Yet once a week or two goes by and your diet becomes routine, you will find that it isn't as challenging as if first appeared. You'll also find that it's undoubtedly worth it. Stick with it, and allow your body the crucial chance to strengthen and heal. And, enjoy!