Lyme & Company

IMPORTANT UPDATE:  
Names of people and places have been changed to protect their privacy. 

My name is Liz Nogueiro and this is my very first blog - and I have to admit I'm a bit nervous. I am not usually one to broadcast my private life in a public way and I don't typically like to call attention to myself. But I feel like I have no choice - I cannot un-see what I have seen, I cannot un-learn what I have learned and I cannot erase my experiences over the past year.  Because of this, I cannot, in good conscience, turn a blind eye to the atrocities that are being committed to innocent human beings - right now, in my town, in my state, in my country and all around the world.  I live in Marin County, California with my husband and three children. After seeing multiple doctors and being misdiagnosed more times than I can count, I was finally diagnosed over the course of the past year with Chronic Lyme Disease, including the Lyme co-infections Bartonella and Mycoplasma, and Morgellons Disease - from here on out referred to as "Lyme & Co.".  My journey into the insanely confusing, frustrating and devastating world of Lyme began over 30 years ago but it is only now that I can look back and recognize that almost all of my random health issues I have experienced have been a direct result of Lyme Disease and its partners in crime - Lyme & Company.

Please join me in my quest to bring attention to this devastating epidemic which has been widely ignored and denied by the mainstream medical community.  You are NOT crazy and you are NOT a junkie - you have a confusing, debilitating, painful, chronic disease, deserving of understanding, compassion, research and treatment just like any other disease. 

I BELIEVE YOU!

and together we can make a difference for the hundreds of thousands of humans out there suffering in silence with no one to turn to.  Many have considered ending their own life and sadly, many more have either attempted or succeeded in committing suicide.  With the exception of a few Lyme Literate physicians and homeopathic practitioners, this epidemic has been ignored and even shunned by doctors, insurance companies, pharmaceutical companies, the American Medical Association and the Center for Disease Control. With over 300,000 people being diagnosed with Lyme Disease each year, you may ask yourself how this is possible.  There are many theories out there and I have my suspicions.  But I am determined to uncover the whole truth no matter what it takes - and to stop the madness and the suffering!  

Enough is ENOUGH!

Here is my story...

I grew up in Portola Valley, CA until I was 14 years old.  My father was a commercial airline pilot for TWA and was transferred to JFK International Airport as his home base.  In the summer of 1984 my family moved to Darien, CT.  Both CA (especially the Bay Area I believe) and CT are hot spots for Lyme disease and a prevalence of deer ticks.  The name "Lyme" actually originates from the very first cases that were clustered in Lyme, CT. A tomboy who loved outdoor sports and activities, I was bitten by ticks many times both in California and Connecticut.  To this day, I have no idea which time resulted in the Lyme infection. Researchers are now suggesting that Lyme can also be transmitted by mosquitos, fleas, and other vectors as well so who knows?  Also, I never had the telltale "bull's eye rash" - that I can remember anyway.

Over the course of the last 30+ years, I periodically suffered from random rashes, headaches, low energy, extreme fatigue, joint pain, muscle pain, endometriosis and fertility problems just to name a few. I've had three surgeries, including a full hysterectomy and a hip surgery, many prescriptions for pain medications, steroids including multiple cortisone injections directly into my spine, anti-depressants and even ADHD medication for an inability to concentrate which started in 2012.  Symptoms would come and go with no rhyme or reason - I just thought I was one of the unlucky people suffering from a "weak immune system".  If there was a flu or virus going around, not only would I get it but I'd have it worse and for longer than anyone else.  I tried vitamins, supplements, immune boosting foods - nothing seemed to help in any kind of significant way.  

In September of 2013, my 8-year old daughter was hospitalized with mycoplasma pneumonia, aka "Walking Pneumonia".  She had been misdiagnosed, prescribed the wrong antibiotics and almost died from sepsis.  Thankfully, she recovered after a few days in hospital.  Her twin sister and I ended up getting it too but we were given the correct antibiotics immediately and got better pretty quickly.  But all three of us were left with lingering symptoms - fatigue, skin rashes and very painful, chronic mouth ulcers on our gums, lips, tongue and cheeks. Sometimes, we could have 2 or 3 sores at a time - not fun!  I took the girls to their pediatrician multiple times and was told that the mouth sores were due to "poor nutrition and lack of sleep".  Right.  All three of us had them.  And our eating and sleep habits had not changed.  I didn't buy it.  I also consulted with my primary care physician who seemed unconcerned and told me to use a salt-water rinse. Perfect.  Finally, after making a fuss, the girls were referred to an infectious disease specialist.  She prescribed an oral rinse with chlorhexidine gluconate as the active ingredient - same active ingredient as in Hibiclens.  This worked!  We were thrilled to finally be rid of the nasty mouth sores but the fatigue lingered. I tried to put it out of my mind and move forward but it nagged at me and I worried about my daughters - they were only 9 and should not be so tired all of the time.

Last September, just as school was starting up for my three kids, I developed an itchy rash all over my body. Soon the rash had spread to my face and chin which began to swell up to the point that I was barely recognizable. I was in the hospital for 4 days and they ran all the tests - every single one of them came back negative, including Lyme. I was given a diagnosis of "cellulitis" by the baffled doctors and sent home with pain meds and heavy antibiotics. Things just got worse from there - I developed painful, fiber filled lesions which covered my face, arms, hands, legs and feet. I was so exhausted that I couldn't get out of bed, I had short-term memory loss, cognitive issues,  confusion, horrible joint pain, fevers, dizziness, headaches and blurry vision.  I saw over 15 doctors who diagnosed me with lupus, chronic fatigue, depression, Delusion of Parasitosis (DOP, a form of schizophrenia) and drug addiction. My husband and the rest of my family didn't know what to think.

In October 2014, I ended up in the emergency room, which happened to be a prominent research hospital affiliated one of the top universities in the Bay Area.  My list of symptoms had grown:  fevers that would come and go, shortness of breath, vertigo, excruciating joint pain, blurry vision and painful, itchy lesions all over my body.  Also, bizarre fibers had been coming out of my skin over the course of the previous few weeks and I brought my collection with me in a small box.  An ER physician came in and gave me a quick once over.  The expression on his face said it all.  He said, "Have you been picking your skin? Because that's what this looks like."  I opened my mouth to respond and he had already left the room.  Soon a psychiatrist entered who had been called in for a psych consultation. He looked at me with such kind eyes - I will never forget those eyes - and I immediately breathed a sigh of relief.  He told me, "Today is your lucky day, Elizabeth.  If any other psychiatrist had been on rotation today, you would be having a much different conversation right now.  First, let me just tell you that I BELIEVE YOU!" (this is where I got the name of my blog - no sweeter words had ever been spoken as far as I was concerned!) He said, "I know you are not doing this to yourself and I am here to tell you that your illness is REAL and physiological in nature, not psychological.  He told me that he knew exactly what I had because he had it too.  He told me that I had a disease called Morgellons and that it is related to Chronic Lyme Disease but researchers had not yet discovered exactly how it's related.  He also said that he gets about 10-15 patients per week referred to him with the same symptoms, all of whom are clearly not mentally ill or addicted to drugs.  "If that many people actually have DOP then we have a much bigger problem in this country because this is happening at hospitals and medical centers all over the United States."  He wrote down the name of a doctor in the city who specializes in Lyme Disease, the same one who had treated him.  I look back on this stroke of luck and wonder where I would be if I had not crossed paths with this amazing doctor.  He just happened to be not only a survivor of Morgellons and Chronic Lyme Disease, but also a Medical Advisory Board member for The Charles E. Holman Morgellons Disease Foundation (http://www.thecehf.org) and has participated in several published research papers on the subject.  Some might say it was just good fortune or a lucky coincidence but I like to believe it was divine intervention.  Whatever the case may be, I am eternally grateful to the doctor with the kind eyes and I will never forget him.  He showed me a level of compassion and respect that I hadn't received from anyone else in the medical community up until that point, nor since.  I communicated with him a couple more times after that but not long after my ER visit, he moved across the country.  Someday I would love to track him down and thank him for giving me the greatest gift of all - hope.

I made an appointment with the Lyme doctor and finally got in to see him a few weeks later.  I had excellent insurance coverage so we were shocked when we found out that seeing a Lyme literate doctor meant paying for EVERYTHING out of pocket - clinical appointments, lab tests, even phone conversations - that is, if you prefer to speak to your doctor rather than the receptionist.  This is because the insurance companies do not cover Chronic Lyme Disease - to them, it does not exist.  And let's just say it is not cheap by any stretch of the imagination.  When all was said and done, we had literally spent thousands and thousands of dollars.  Imagine the poor people who simply can't afford this! What are they supposed to do???

After meeting with the Lyme doc, he gave me a clinical diagnosis of Chronic Lyme Disease and Morgellons Disease.  He started me on Doxyclicline and ordered a bunch of blood tests.  He told us that the Lyme tests performed at most hospitals and laboratories (the ELISA) are accurate only 50% of the time and that false-negatives are common place.  He explained that the ELISA test is not sensitive enough to detect the Lyme bacteria (called Borrelia Burgdorferi) in most cases.   He was so convinced I had Lyme that he wanted to get me started on the meds right away.  But he warned that my blood tests (which take 6 weeks to come back) could very well come back negative or indeterminate at first.  If that is the case, being on the antibiotics will help because they will "stir things up" and subsequent blood tests will show the actual results.  He also warned me about the "Jarisch–Herxheimer reaction" (known as "herxing" in the Lyme community).  This is when you experience a severe worsening of symptoms after starting treatment.  The bad news is that it's pretty miserable but the good news is that you know the treatment is working.  It also confirms that the clinical diagnosis is correct because if you don't actually have the disease then you won't herx.  Well - he was right on both counts.  I got WAY worse.  My hands and chin blew up, became covered in angry, puss-filled blisters, and turned BRIGHT red and blazing hot to the touch like they had been lit on fire. Any exposure to sunlight or water any warmer than "cool" resulted in excruciating pain.  In order to sleep, I had to cover my face and hands with wet, ice-water soaked towels.  The fatigue I had experienced before turned into bone-crushing exhaustion, the likes of which I never knew existed.  And sure enough, six weeks later, my Western Blot Lyme test came back IND (indeterminate) which led my family and friends to doubt the Lyme diagnosis.  But the Doctor assured us that this was typical, especially if you have had Lyme for a very long time.

Lyme & Co. are very clever - they suppress your immune system while at the same time tricking it into believing that they are not there.  They hide in your connective tissue and cover themselves in something called "biofilm" to prevent detection.  Many people have few if any symptoms for years and years - until they DO and then they become very, very ill, seemingly out of the blue.  Because of this, Lyme literate physicians recognize that Chronic Lyme is a clinical diagnosis, as opposed to one based upon a positive blood test.  The Doctor told me that he was positive I had Lyme Disease, as well as Morgellons Disease, which he confirmed after examining my skin lesions under a hand-held microscope.  In addition to the Doxycycline, he also prescribed an anti-parasitic and an anti-fungal medication and ordered another panel of blood tests.  I added this to my protocol and added extreme nausea to my list of side effects.  Meanwhile, nobody believed that my symptoms were a result of the medication I was taking.  It was a nightmare. I thought I was dying and nobody would believe what I was telling them - except for a handful of people and my father who believed me from day one.

Finally, just after Mother's Day (2015), my dad and my Aunt Julie sent me a "Rife machine" and within three days I was 80% better. (See www.rifedigital.com for more information on Dr. Royal Rife and the amazing technology he developed the 1930's!) It was a miracle. I'm off all meds now, except for an estrogen patch, and continue to use my life-saving Rife machine daily and every single night while I sleep. I've still had some bad days but they are very few and far between and nothing like the hell I was in before. My energy is the best it has been since I was a kid, I'm clear-headed, and in no pain! I still struggle with skin issues - lesions, itchiness, swelling - but the improvement is so incredible that I am convinced it's just a matter of time before the skin is completely clear as well.  I feel vindicated, relieved and hopeful for the first time in months!

But I am still so deeply disheartened and frustrated by the manner in which I was treated by the medical community and the lack of information and support for Lyme patients and their loved ones.  It pains me to think about the thousands of Lyme sufferers and their families out there who are still in the thick of it, trying to make sense out of chaos, confusion and deception.

In my gut, in the depths of my soul, I know this happened to me for a reason, for a greater purpose, certainly one that is much, much bigger than just me or my own personal struggle.  It's about standing up in solidarity for an injustice so despicable, so utterly inhumane that it's hard to even comprehend.  I will do whatever I can to shine a NEON light onto the realities of this devastating disease - not only for the innocent victims of Lyme, but also for their family and friends.  Anyone who has witnessed this disease first-hand will tell you that it is truly life-altering for all of those involved.  Lyme wreaks absolute havoc on the lives it touches and can lead to families being destroyed, financial devastation and pure helpless agony for those who are unable to help their loved ones.  The stress of this disease alone is a story in itself.

I am on a mission - this needs to END! The Lyme community has many challenges but the one that stands out for me is that we are all so sick, exhausted, in so much pain and/or cognitively impaired in some way that it's hard to stand up and demand justice. With the mainstream medical community undermining us at every turn, it's no wonder we can't seem to get anywhere. My gut feeling is that there are major political and financial factors at play here - some of which we can probably guess (i.e. pharmaceutical companies), others we probably could not have imagined in our wildest dreams - or if we did, it was only in the context of a major motion picture.

I am going to use this blog to provide more detailed information on some of the things I touched on above, updates on my continuing recovery, treatment recommendations, and things that come up along the way.  One thing I know about Lyme...never underestimate its ability to be two steps ahead, hiding away just waiting for an opportunity to pounce.  Fighting Chronic Lyme Disease is not just a battle, it's a full-on war with an indefinite ending.  To look at is any other way is unrealistic.

We DESERVE truth, respect and dignity - it's that simple.  Common human decency.  Not so much to ask, right?  Together we can make this happen!  We got this.

And…

I BELIEVE YOU!

:-) Liz