Solid Grapes

Living with Lyme & Co. is somewhat akin to having a dozen frat boys move into your house and become your new roommates - only not nearly as much fun.  Once Lyme has taken root and made it clear it's here to stay, you feel like a bomb has gone off in your life.  Bits and pieces of a life once well-lived and cherished are strewn about everywhere - but at that point you are just too exhausted to care - or even notice.

Getting through the day is hard enough...but returning phone calls?  Answering emails?  Doing anything that is not absolutely necessary? Probably not going to happen -  and not because you don't want to but because the energy it takes to perform even the simplest of tasks evades you.  Lyme literally sucks the life out of you until there is no life left.  In it's place is a shell of a person surrounding by collateral damage - unrecognizable shreds that were once your family, friends, laughter, joy, holidays, fun.  A beautiful life...poof, it's gone.

At first, the people around you are so wonderful and understanding, offering a helping hand and words of encouragement.  But as days turn into weeks, and weeks turn into months with no improvement and very few answers, sympathy wanes and people start to wonder.  Is she really sick?  Does she just want attention?  Is it "all in her head"?  Is she crazy or abusing drugs - or both?  Or is she just lazy?

In all honesty, you can't really blame them - you are sick of all of it too - sick of thinking about being sick, sick of talking about being sick, sick of having to ask for more and more favors from family and friends, sick of seeing the sad, scared looks on your children's faces as they realize that their mom is not going to be well any time soon, if ever.

As the old saying goes, you are sick and tired of being sick and tired!  Add to the fact that your doctors are all too eager to diagnose you with mental illness and prescribe anti-psychotic medication or send you to rehab...what is your family supposed to think?

It would be one thing if you had a clear-cut diagnosis, with a concrete treatment plan and a team of doctors who are ready and willing to help you fight for your life and talk to your loved ones, explaining exactly what's going on with you.  The problem with Lyme is that none of that happens.  You are lucky to even get a diagnosis - and if you do, it usually takes months and months of going from doctor to doctor to doctor begging and pleading for someone to please help you, please believe you.  You have to fight for every little thing when you have Lyme.  With the little bit of energy you can muster every day, you desperately search the internet for answers in the hopes of convincing those around you that you are indeed ill.  You are constantly having to defend yourself and prove that you are not crazy and in need of a shrink! You become desperate and hysterical which just confirms their suspicions.  And did I mention you are EXHAUSTED?  It's the worst kind of hell.

By this time, most people in your life have pretty much reached the end of their rope.  And that's about the time that you get started on your meds - which, at first, make you a thousand times worse.  Did I mention that it can take months and even years before you even START to feel better on a typical Lyme protocol of antibiotics, anti-parasitic and anti-fungal drugs?  You can imagine what this does to a family, to a marriage - never mind friendships.  Lyme is like a jealous - it doesn't want you to have anyone else in your life. Isolation becomes your new normal.  Loneliness, hopelessness and desperation plague your every waking moment.

A good analogy for what happens to your relationships once Lyme & Co. makes your body it's new home, is this: picture a beautiful bag of crisp, green grapes (organic, of course) fresh from your local grocery store.  You take out a "bunch" to wash it and immediately a few fall off of the bunch or are left at the bottom of the bag, but the great majority are still solid.  Take that solid bunch and give it a good shake.  A few more fall of, right?  Shake it again, this time harder.  Do this several more times, each time shaking that bunch of grapes a bit harder each time.  By the time you are done, you are lucky if you have a handful of grapes left - and a few of them are hanging by a thread.  Each of those grapes represent a person in your life that you lose as a direct result of this disease - relationships that would not have been lost if you had not gotten sick.  I have talked to many Lyme sufferers and this is the number one, hands down hardest thing to deal with and most profound loss.  You simply don't have the energy to keep your relationships going - and it literally breaks your heart.

If you are lucky, you have a few grapes that just won't budge, no matter what.  Those people become your lifelines.  My solid grapes kept me sane and gave me the will to continue even when I didn't think I could endure one more hour.  They listened to me, they never doubted me and most importantly, they never gave up on me, even when I didn't respond to your email, texts or phone calls.

I want to take this opportunity to thank my solid grapes.  Thank you, Dad.  Thank you to my sister, Christie. Thank you, Jessie Thomas. Thank you, Renee Wiggs. Thank you, Cheryl Piry.  Thank you Luci and Cezar Petruic. Thank you, Kate Ripple, Kathy Swindle and Leslie Bergholt.  A huge thank you to Staci Kay Smith, who is an ER nurse and also a fellow mom on our daughters' soccer team.  Staci was the first person to recognize that I had Morgellons Disease. Staci, you may not think you did much to help me but you DID!  You have no idea how much your support meant to me.  I also want to thank Dr. Edward Kilbane, the psychiatrist at Stanford who first diagnosed me and offered me compassion and hope during one of the darkest times in my life.  And thank you to Cindy Casey, R.N., Director of The Charles E. Holman Morgellons Disease Foundation (www.cehf.org) who responded so quickly to an urgent message I sent her to "Please please call me!".  Cindy was and is an amazing warrior in the fight to increase awareness and raise funds for research and ultimately a cure for Morgellons Disease and Chronic Lyme & Co.  I am so inspired by her efforts on a daily basis and I know she and her foundation offer hope to thousands of people on a daily basis.

If you are reading this and know someone who is chronically ill, I implore you to please take a moment and offer them some sunshine.  It doesn't take much to brighten their day.  A kind word, an understanding ear, even a compassionate smile can make such a profound difference to a person suffering day in and day out, feeling alone, terrified, judged and hopeless.  Find it in your heart to be one of their "solid grapes".  You might just save their life.

And please keep this in mind: Nobody chooses to be sick.  Nobody enjoys being helpless and dependent on others for simple daily tasks.  Nobody relishes letting family and friends down multiple times a day.  I find it so curious that some people actually think that you would pretend to have Morgellons Disease or Lyme or any other chronic illness - who would sign up to be a chronically ill social pariah?  Things are not always what they seem; try to reserve judgement until you are 100% sure that you have all of the facts.  Please.  To all of my solid grapes...I am so grateful.  This is me, trying to pay it forward in some small way.

To everyone out there suffering with Lyme & Co...you are not alone.  I will fight for you to the end!  Hold tight my friends, help is on the way.

History of Dr. Royal Raymond Rife by David F. LaRocque

Dr. Royal Raymond Rife

I have mentioned before that my dad (along with my Aunt Julie) was the one who originally sent me the Rife machine, which ultimately saved my life.  The following is an email recently written and sent out to friends and family by my father, David LaRocque, explaining how it all happened, as well as the research he has done on the history of Dr. Rife and his miraculous machine:

As a result of a Facebook post by my older daughter Elizabeth in which she described her recent miraculous recovery from the worst symptoms of a chronic Lyme/Morgellons infection with the use of a Rife machine (after many months of unsuccessful treatment by conventional drug-based medicine), Lizzie received a large response from a number of people suffering from the same illnesses. The initial responses were all women, but I know that there are many male Lyme/Morgellons victims out there because I have talked to them.

Feeling that she has a new mission (or calling) to help others suffering from these life-threatening infections with emotional and informational support, Lizzie decided to start a blog dedicated to bring together people who have heretofore been fighting these diseases alone, with little support or understanding from the medical profession, and no insurance coverage for chronic Lyme disease, or even recognition by doctors that Morgellons is a real pathogenic disease (it is typically diagnosed as ‘Delusions of Parasitosis’ or ‘DOP’ requiring psychiatric treatment).  

http://ibelieveyouhavechroniclymedisease.blogspot.com/

As some of you may know, I had some previous incidental familiarity with Morgellons disease as a result of pure curiosity regarding stories and videos to which I was exposed (after accidentally encountering references to Morgellons on the internet), looking into it, and discovering its strange manifestations and the inexplicable refusal of the medical profession to acknowledge the physical symptoms of Morgellons which was reported over and over by Morgellons sufferers. Because of this familiarity, when I first heard about Lizzie’s symptoms, and saw photos of her lesions, I immediately recognized what looked to me like Morgellons.

With some further internet research, I came across the reports of a man in Houston, Texas named Mike Chapala who claimed to be a Morgellons sufferer. Mike is an electronic engineer, and his research led him to a conclusion that Morgellons is caused by man-made micro-organisms that are based on nano-technology. In other words, according to Mike, these organisms are actually composed of tiny electronic circuits. This conclusion led him to hypothesize that if true, then these miniature electronic circuits should be vulnerable to destruction by a powerful magnetic field, much as a strong EMP (electro-magnetic pulse) could hypothetically disable all computers and other electronic circuits over a large area if employed as a tactical weapon.   

Mike reported, in a series of videos on Youtube, that he had designed and constructed a device designed to expose the human body infected with Morgellons to such a strong magnetic field, and that his initial results were very favorable. He claimed, in a personal telephone conversation, that once treating himself with his magnetic field device, he was 99 per cent free of the Morgellons symptoms he had which were almost identical to Lizzie’s, and similarly unresponsive to drug-based medical treatment.

Morgellons Cure - NEW DISCOVERY! (832) 343-5425

https://www.youtube.com/watch?v=P-3C481USJ4

Morgellons Cure! - AM Coast To Coast Part -1 (832) 343-5425

https://www.youtube.com/watch?v=-xXxQ9O_pvo

In this same phone call, undertaken with the thought of sponsoring a trip to Texas for Lizzie to get her help for her deteriorating condition, Mike put another young man on the phone with Morgellons who had just arrived from New Orleans. I will call him Nick. Mike had no previous relationship with Nick. Nick reported to me that he had a long-standing, serious and painful case of Morgellons, and had not been able to achieve resolution of his symptoms from conventional medical treatment. He came across Mike on the internet, and had traveled to Houston specifically to seek relief from his Morgellons symptoms.

Nick had received his first magnetic field treatment that morning, and he told me that he had experienced a dramatic improvement almost immediately, with significant clearing of the so-called “brain fog” that is characteristic of Morgellons. As I recall his words, he said he felt that he was “80 per cent improved” from the way he had felt earlier in the morning in terms of the feeling of chronic fatigue, energy level, and brain fog.

[NOTE: When I talked to Mike Chapala he was in the process of relocating to Brownsville, TX in order to set up a treatment facility across the border in Matamoros, Mexico to avoid running afoul of the FDA. I have never had any dealings with Mike Chapala nor have I purchased any of his products. My contacts with him by phone and email were limited to information gathering, although I considered escorting Lizzie to visit Mike if no other relief could be found for her.]

Lizzie responded to my Mother’s Day greeting on May 10th of this year (2015) with the following message:

“Thanks Dad... I'm so sick again that I actually spent Mother's Day in bed!” :-(   

I was extremely concerned, even alarmed. I had been led to believe that Lizzie was getting professional medical care, and that her condition had been expected to improve. In fact, Lizzie’s condition was seriously deteriorating. She was not getting better. She was not able to care for her children, and she was unable to do virtually anything that we consider part of normal everyday life.  

At that point, I began to pray even more than I had been, and members of my spiritual community in the Bahá’í Faith were also praying for her. Several days later, in an online chat room devoted to an investment in which I am involved, somebody posted a comment relating to a health issue, and a responding comment mentioned something called a “Rife machine”. I had never heard of the name Rife before, had no idea what was being referred to, and put it out of my mind. That evening, I recalled this comment about the Rife machine and decided to look into it out of curiosity. As I gathered the first bits of information about Dr. Royal Rife and his amazing discoveries, I was quite intrigued.

As I learned more, I began to think it could be something that could help Lizzie. I found a web site (www.rifedigital.com) with extensive information on the Rife technology, as well as a listing of frequencies recommended for relieving symptoms of various diseases and conditions. I immediately thought of checking for a Morgellons listing, feeling certain that since Morgellons is so little-known it was unlikely to be listed. Much to my surprise, a listing for Morgellons was right there. I started getting very interested. After reading the glowing testimonials to the effectiveness of the Rife machine which were posted on the Rife Digital site, I was even more interested. Then I looked into the cost of a machine, expecting an amount that would be completely out of the question. To my surprise, the cost of a Rife machine was significantly lower than the cost of a trip to Texas for me and Lizzie for magnetic field treatment.

The Rife story is more than intriguing. It is absolutely fascinating, while the brutal suppression of Dr. Rife’s discoveries is both shocking and alarming. It is clear that the medical establishment does not want the Rife technology to become widespread and generally accepted because Rife’s approach to treating infectious disease is direct, non-drug-based, effective, and relatively inexpensive.

Rife technology is based on Dr. Rife’s discovery, after years of painstaking research in his laboratory in Point Loma, San Diego (funded by Henry Timken of the Timken Roller Bearing Company in San Diego, whose company saved millions of dollars of potential losses in failed roller bearings as a result of metallurgical flaws Dr. Rife pinpointed and corrected in the bearing manufacturing process) that micro-organisms in the human body (bacteria, viruses, fungi) each have unique resonant frequencies. If the organism is excited by the respective “mortal oscillatory rate” (MOR) with sufficient intensity, it will disintegrate (much like a crystal glass being shattered by the high frequency of an opera singer’s voice) without damage or harm to any surrounding tissue.

Dr. Rife had attended medical school at Johns Hopkins University for two years before leaving to study parasitology at the University of Heidelberg in Germany, where he was awarded an honorary doctorate in parasitology by that university for his original research achievements while there. It also appears that Rife had been commissioned as a U.S. naval officer (he is reported to have been addressed as ‘Commander Rife’ circa 1936*), and may have been actually working on behalf of the U.S. government while in Germany just prior to World War I. Upon returning to the U.S., Rife went to New York to learn everything he could about optical physics with the famous Zeiss Microscope Company, since he realized that the research microscopes of the time were simply inadequate for the research on isolation of a possible cancer virus which he had in mind. He needed a microscope with magnification power many times the power then available in order to be able to see a live virus under a microscope.

* History of Royal R. Rife, Jr. (and the Rife Ray machine)    http://www.dfe.net/RifeHist.html

Once Dr. Rife got settled in San Diego (and after building the engine for a powerful racing boat for Henry Timken, and piloting the boat in the major race in which he set a world speed record for racing boats which survived for over 80 years) he set about building a powerful microscope. Using original and revolutionary techniques, Dr. Rife created a microscope such as had never before been seen, which overcame what were believed to be absolute physical limits to magnification power due to certain optical principles, and which permitted direct visualization of live micro-organisms stained not by dye, but by an original and revolutionary technique of staining with monochromatic light by separating white light passed through an adjustable quartz prism into discrete light frequencies which could be tuned to the unique frequency which would cause a certain organism to self-illuminate in a color unique to that organism. This was a revolutionary technique which no scientist had ever previously imagined or attempted.

                        

  

The Rife Microscope #3 – The most powerful optical microscope ever built

As other scientists learned of Dr. Rife’s accomplishments, Rife began to develop relationships in the medical and scientific communities with prominent individuals who admired and respected his work. Among these supporters were a leading physician in Los Angeles by the name Dr. Milbank Johnson, chairman of the Los Angeles County Medical Society (who never wavered in his strong belief in and support of Dr. Rife); Dr. Arthur Isaac Kendall, a well-known bacteriologist at the Northwestern University School of Medicine; Dr. Alvin G. Foord, chairman of the American Association of Pathologists; and Dr. Edward C. Rosenow, a world-famous bacteriologist at the Mayo Clinic, among many others.

Dr. Kendall came to California to work with Dr. Rife and confirmed Rife’s discovery of the carcinoma virus he named the “BX” virus, the discovery of which was made possible by the use of a culture medium developed by Dr. Kendall called the “K Media”. A second virus for sarcoma was also isolated and named the “BY” virus.

In 1934 a trial of Rife’s machine was conducted in La Jolla at the suggestion of these doctors, to satisfy themselves that the concept really worked safely on humans, after extensive testing on laboratory animals. The facility for the testing was funded by the Scripps family. The sponsoring physicians and scientists, under the auspices of the University of Southern California School of Medicine, gathered sixteen terminal cancer patients (including several who were also infected with tuberculosis) for treatment with what Rife called his “Ray Beam” machine. At the end of the ninety day test period, fourteen of the patients were free of cancer. The remaining two patients were reported to be free of cancer several weeks later. So all sixteen cancer patients were apparently cured of their cancer by the Rife machine.

Later, Dr. Morris Fishbein, editor of the Journal of the AMA, attempted to take over Rife’s company. When that move failed, Fishbein set about to destroy Rife and his technology. It was during this time that a major bio-scientific laboratory in New Jersey which was just completing a scientific study of the effectiveness of the Rife technology burned to the ground, and the report it was to have released never appeared.

After a brutal court battle in 1939 in which Rife prevailed but was bankrupted in the process, resulting in the destruction of his company, Rife abandoned his work on radio frequency treatment based on his concept of Mortal Oscillatory Rate (MOR) – the specific frequencies that produce mortality in each organism. To add insult to injury, Rife’s research lab was broken into, his research microscope was vandalized, and all of his years of accumulated research data were stolen or confiscated.

http://en.wikipedia.org/wiki/Royal_Rife  

Dr. Rife was retired in Point Loma, and working on other projects relating to the use of his advanced microscope in police forensics work. A young man named John Marsh had a wife who was terminally ill with cancer. Marsh had heard about the Rife machine, and took a job with Convair in San Diego in order to seek treatment for his wife by Dr. Rife. He located Dr. Rife and visited him at his home in Point Loma. He pleaded with Dr. Rife to help his wife. Dr. Rife refused initially, but finally relented and agreed to reactivate an old machine and use it to treat Marsh’s wife. As a result of this treatment, Marsh’s wife was cured of cancer.

This experience led John Marsh to join with a successful businessman named John Crane to convince Dr. Rife to participate in the start-up of a new company called Life Lab which would design an improved Rife machine and make it available for use by doctors throughout the world. Once the AMA learned of this, they arranged for the FDA to raid the new company. All Rife machines in the company inventory were destroyed, and all company records were confiscated. Crane and Marsh were prosecuted and went to prison for medical fraud in connection with the sale of the Rife machine. This may give you an idea of just how much the medical/pharmaceutical establishment is determined to continue to suppress the Rife technology.

You are encouraged to watch the Rife video. It is absolutely fascinating, yet also extremely disturbing if it is true that a powerful and effective medical treatment modality has been crushed by the medical/pharmaceutical establishment.

http://rifevideos.com/

   Dr. Royal Rife and wife Mamie visiting the grave site of Mamie’s father Tom An Quin

                                              

One final discovery I made in my research about the life of Dr. Royal R. Rife is that during his later years Dr. Rife had become a member of the Bahá’í Faith, a global religion based on the revelation of Bahá’u’lláh (“The Glory of God”) and destined to bring about the unification of mankind. His wife, Mamie Quin, was a member of a prominent San Diego family of Chinese descent. Dr. Rife’s final resting place is in the Mt. Hope cemetery in San Diego, where his grave marker can be seen with the nine-pointed star of the Bahá’í Faith engraved thereon. He had passed away, virtually unknown to the late twentieth century medical and scientific communities, on August 5, 1971 in San Diego.

Dr Royal Rife may have been one of the greatest scientists of the twentieth century, but because his discoveries had become so controversial, information about him and his extraordinary achievements has been suppressed and kept hidden from mankind.

Dr. Royal R. Rife in his own words:

“Having spent every dime I earned in my research for the benefit of mankind, I have ended up as a pauper, but I achieved the impossible and I would do it again.”

http://rifevideos.com/                                                          

The rest of the story is covered by Lizzie in her new blog. The initial posting is brief, but it will be expanded in the future to include more information on her experiences in overcoming this dreadful disease and in using the Rife machine.

David F LaRocque

(father of Elizabeth LaRocque Nogueiro)

Anxiety Attack

Today I had an appointment with my OB/GYN - an appointment I had been putting off for months.  I had a full hysterectomy a few years ago so I didn't really understand why it was necessary...but my doctor insisted and sent me a message that she would not refill my prescription for my estrogen patch until I saw her.  Ugh.  So I went.  I was dreading it for some reason and wasn't sure exactly why I was dreading it.

As I walked into the building, I could feel my heart beat a little faster and I felt a slight pit in my stomach.  By the time I was checked in and brought back to the exam room, I was having major anxiety.  The nurse took my blood pressure and it was high so she did it again - even higher.  Ugh.  The nurse told me to change and said she would need to make a note in my chart and refer me to a specialist for the blood pressure issue.  Double ugh.

The doctor came in.  I had to change insurance companies a few months ago so this doctor was new to me - I had never seen her before.  She asked question after question and as I answered each one,  the panic I was feeling began to grow.  I still didn't really know why I was in such a state but later, as I walked to my car, and the feeling began to wane, I realized what must be going on.  Going to the doctor has turned into a traumatizing experience for me.

As I mentioned in my first post, I have been to see many, many doctors over the course of the past year.  With the exception of the psychiatrist who first diagnosed me with Lyme and the Lyme-Literate Doc, every single appointment was disturbing, ranging in severity from mildly upsetting to downright traumatic.  Often I would leave in tears, sometimes sobbing tears.

As a result of my first FB post, I have talked to several people with Chronic Lyme who have all experienced the same thing and it makes me really sad. Doctors are good people, great people even.  They spend years and years in school and residency, they sacrifice time with their families, holidays, sleep and much, much more.  I have always held doctors in extremely high regard and have felt nothing but gratitude and respect toward them.

But as a result of my experiences this past year, my feelings toward doctors has changed into something resembling distrust and even fear.  I hate that this has happened because doctors don't deserve that - I have several family members and friends who are in the medical profession and if they are reading this right now, I truly hope they do not take offense.  The only reason I am calling attention to this is because I recognize that something is profoundly wrong with our medical system and it needs to be fixed - and FAST.  If we brush it under the rug and pretend like it's all fine because we are concerned about ruffling feathers, then nothing ever will change.  We can't allow that to happen.

I know there all a LOT of amazing physicians out there - and truly, from the bottom of my heart, I mean no disrespect.  But this is not okay!  Treating sick people so poorly is not okay - it's disgraceful!  Lyme Disease is a DISEASE.  Just like cancer, diabetes, and Alzheimer's.  People are suffering.  Really, really suffering.  Imagine telling a cancer patient that their symptoms were due to mental illness or drug abuse?  People would be horrified.  Why don't Lyme patients deserve the same level of compassion and respect?  I just don't get it. I just can't wrap my brain around it.

This needs to change - and FAST because the statistics are not good - over 300,000 people will be diagnosed with Lyme Disease this year.  Thousands and thousands more around the world are currently suffering systemic, debilitating, life-altering symptoms.  Lives are being decimated. Families are being destroyed.  Somebody needs to listen!  Somebody needs to take action!

I've said this before - I am well aware that this is an extremely polarizing and controversial subject.  By putting myself out there and speaking my mind, I will in all likelihood lose a few friends.  Family members may choose to keep their distance from me.  But it's a chance I am willing to take.  Why me, you may ask?  Why NOT me?

So I will keep screaming until someone LISTENS, until ACTION is taken and significant changes are made.  I won't stop screaming.  I can't.

As Glennon Doyle Melton says, author of "Carry On, Warrior" one of my favorite books of all time, my mission is to be a "Truth
Teller and Hope Spreader."

Original Facebook post from June 4, 2015

First I want to say that I hesitated to post something so personal on FB, but I feel compelled to share my story in the hopes that it will help other people who are suffering like I was…even if I can help just one person, it will be worth it! 




The pictures below are before and afters - the first one is what I looked like just 17 days ago. The second one was taken today. I know it's hard to believe but it's true! Since September, I have been suffering for the past 9 months with Morgellon's Disease, a systemic, debilitating, confusing and extremely painful illness, the existence of which most doctors do not acknowledge. The symptoms wreak absolute havoc on your life. 


As I quickly learned, Morgellon’s Disease is a very controversial and polarizing subject, which makes the whole thing very complicated – I still don’t understand it completely. But unfortunately for those of us who have lived or are living with this awful disease, Morgellons is very, very real. Just Google it and you will find an unbelievable amount of misinformation on the Internet – and because the information and studies come from doctors, people tend to believe it and there is nothing that will convince them otherwise.

I was told by doctor after doctor that I was either suffering from mental illness or I was a drug addict - either way the lesions all over my body were self-inflicted. It was horrific, a living hell that I would not wish upon my worst enemy.

Morgellons is thought to be associated with Lyme Disease and I had been to see a Lyme-literate doctor last October. He prescribed antibiotics, an anti-parasitic and an anti-fungal medication but after one round I had to discontinue them because it just became too costly. It was very expensive and it was not covered by insurance – all out of pocket. We literally spent hundreds of dollars, maybe even thousands of dollars trying to figure out why I was so sick. The Lyme doctor said that it was necessary to stay on those meds for at least a year to see any improvement - and since taking them I was just getting worse. 

On Friday, May 22nd I pretty much hit rock bottom – I felt hopeless and alone, suffering a misery that words cannot describe. I could barely get out of bed and I was in constant agony. My quality of life was non-existent. I literally thought I was dying. My husband and my children were suffering greatly as they watched me,day after day, week after week, month after month as I got sicker and sicker. I know that my husband felt so helpless and overwhelmed- he was doing his job and mine and with three kids it was not easy. I worried constantly about the lasting effect this would have on my kids and there seemed to be no end in sight.

Ironically, on that same day, a device arrived in the mail, sent to me from my father and my aunt. It was called a “Rife Digital Professional”, a device that uses radio frequencies to kill pathogens. My dad had read about it online and it had apparently helped other people recover from Morgellons and many other illnesses. It was a long shot but at that point I had nothing to lose. It did not involve drugs and was non-invasive so I started using it that day.

I cannot even believe I am saying this, but it only has been 2 weeks and I am almost 100% cured. As you can see in the picture, the lesions on my face have all healed up and disappeared. The brain fog, extreme fatigue, pain – all of it is gone! It feels like a miracle has occurred in my life and I just had to share it! I also want to add that this is only MY experience – I have no medical background and I do not represent the company in any way. I have no idea if it would have the same effect on others with this disease but for me, it is nothing short of miraculous! Like I said before, if sharing my story helps just one person I will be so happy!! 

I would also like to add, I know there is a whole lot of controversary around some of the things I have written about in this post. I would just ask that if you feel compelled to write anything negative, please refrain. My family and I are celebrating the regaining of my health and our lives. Negativity or judgment of any kind would not be appreciated.

I am so thankful to my dad and to my aunt for believing me and for saving my life! who I wish everyone out there love, happiness and peace…and of course health. I will never again take my health for granted, that is for sure.

May 18, 2015

June 4, 2015

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