ILADS logo

According to the definition provided by Wikipedia: “The International Lyme and Associated Diseases Society is a non-profit pressure group which advocates for greater acceptance of the controversial and unrecognized diagnosis ‘chronic Lyme disease'” In other words, the people at ILADS are fighting to make certain that Lyme disease — especially chronic or persistent Lyme disease — is recognized as a “real disease.” [Link]

 

The reason why I wanted to include the Wikipedia definition is because of the term “pressure group,” which I find to be quite apropos. The reason why I find it to be so appropriate is because many, if not most, medical practitioners in the mainstream medical community have not (at least publicly) accepted the fact that Lyme and the associated coinfections are diseases that have long-term consequences. Subsequently, groups like ILADS have had to apply “pressure” to try to get other medical organizations to recognize, and publicly acknowledge, the seriousness of the diseases.

That said, ILADS should not be confused with the Infectious Disease Society of America or IDSA. Though, from its namesake, one might imagine that the IDSA would be an organization that concentrates on safe and effective treatments for diseases such as Lyme, there has been ongoing controversy surrounding its Lyme treatment guidelines and intellectual conflicts of interest among a number of its members.

In November of 2006 Connecticut’s then Attorney General, Richard Blumenthal, who is now a U.S. Senator, launched an investigation into the IDSA’s Lyme guidelines development process and specifically looked for antitrust violations. In a press release issued in May of 2008, Blumenthal stated: “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” And the importance of this issue can not be overstated given that all conventional medical practitioners follow the IDSA guidelines when it comes to treating Lyme disease. Perhaps more importantly, medical insurers use the guidelines to determine payments to the practitioners for the services they render, which also plays a huge role in the treatments they are willing to provide. Even more concerning is the fact that a number of physicians have lost their licenses to practice medicine when their treatments have deviated from the IDSA’s guidelines.

ILADS was founded in 1999 and it has focused on educating practitioners and the general public on all of the dreadful diseases that are, primarily, transmitted by ticks. It also gives patients and the loved ones of patients a way to find Lyme Literae Medical Doctors (LLMD) in their respective areas of the country. The reason this is important is because there are a number of physicians who are worried about the consequences they may have to face if it becomes known that they are willing to treat patients beyond, or outside, the IDSA guidelines; and, so, they do not openly advertise their services. Luckily, however, many physicians have been willing to provide their contact information through the discreet services provided by ILADS. In fact, I actually used ILADS services to locate Kathleen’s Lyme doctor in our area, and I could not be more grateful for the organization’s assistance.

The name of the doctor provided to us by ILADS is Dr. Thomas Moorcroft and he has been the only doctor we have seen to date who has been willing to work toward curing Kathleen as opposed to simply treating her symptoms.

For any of you out there who has been afflicted with Lyme, or for those of you who knows someone who has been afflicted with the disease, contacting ILADS may be well worth your time and effort. In Dr. Moorcroft’s case, it is my understanding that he, like many other LLMDs, is able to actually treat patients out-of-state once a doctor/patient relationship has been developed through an initial visit — perhaps, at this point, even a virtual visit — and from personal experiences, I would certainly say that contacting his office also may be well worth your time and effort.

The ugly truth is that, like COVID-19, Lyme disease is a pandemic. Unlike COVID, however, Lyme has received much less attention and, thus, far fewer resources (namely: money) to fight the disease. The good news, though, is that there are people out there who have the expertise, and the willingness, to help those who are suffering.

With any luck, the COVID-19 pandemic may actually serve to be a catalyst for change in the way in which Lyme disease is viewed. With all of the resources that have been dedicated toward developing vaccines for COVID, it may be fair to say that the research will lead to vaccines and more effective treatments for those suffering with diseases such as Lyme.

As I sit at home and watch all that is unfolding in the world around us, I have to wonder if I shouldn’t also create a website entitled ‘CovidTimes.’ No matter how we choose to refer to it, this is most certainly an extraordinary time to say the least.

While now having to cope with COVID-19, I still have been dealing with my daughter’s issues with Lyme disease. Shortly before the Christmas holiday Kathleen had a major seizure and it felt like a major set-back. She had gone almost one year without any seizure activity and I thought for sure that we were totally on the path to full recovery. After her seizure, however, I was not feeling as good about our situation.

Though, Amy and I now believe that Kathleen’s seizure was the result of Kathleen neglecting to take her antiseizure medications the day before the seizure occurred: and, as sad as it may sound, I was relieved to think that she had forgotten to take the medications since the alternative thought (i.e., that the diseases were progressing) was so much worse.

Personally, I believe that we, as a species, have altered the ecosystem to a point of no return and that we have finally reached a day of reckoning. For decades scientists around the world have been trying to warn us of the impending doom, but, collectively, we were not listening. Now, each and every one of us will need to do our level best to try to figure out how we can survive this mess.

Not long ago I read an article which essentially said that if bugs were to be completely eliminated from Earth that the planet would be thrown into absolute chaos, but that if human beings were to be rendered extinct, the planet would return to a state of equilibrium. The article made me think of the movie “The Matrix,” when the fictional character “Agent Smith” said: “Human beings are a disease, a cancer of this planet. You’re a plague and we are the cure.” But, unlike the movie, there is no one other than ourselves, individually or collectively, who can resolve the issues; and, sadly, there are so many of us who seem unwilling to accept the grim reality of our circumstances.

To be perfectly honest, there have been days when I have seriously wondered if I did not make a mistake by bringing a child into this world. Putting aside all of the various health issues that so many individuals are enduring, our world has become a very unstable place — economically, medically, politically and socially, and I worry about the quality of life that Kathleen and so many young people will have in the future.

Putting aside the recent seizure, for me and my family things things have been going pretty well. Kathleen has been taking an antimalarial/antiparasitic medication for the past seven months to kill the babesiae, and she has been doing so much better — thank God! For a time, I took comfort in the idea that she may be protected from COVID-19 because of her blood type and because of all of the treatments that she has undergone for Lyme and the co-infections, but I am unsure if my sense of comfort is only wishful thinking, especially given the way in which the virus has been mutating. As of the time of this writing, scientists have discovered three different mutations, one of which, out of South Africa, may be resistant to antibodies, and that is very worrisome.

Much like Lyme and other bacteria, SARS-CoV-2, or COVID-19, prefer certain blood types, but no matter what blood type one may be, the absolute best advice that anyone can offer would be to do all that you can do to avoid being afflicted with any of these diseases, bacteria and viruses alike.

Sadly, though, people are getting very tired of masks and social distancing; and being able to stop the spread of the virus is still very much contingent upon everyone doing their part to avoid being infected and thus spreading the virus.

And, to complicate matters even further, because of the slow roll-out of the various vaccines that have recently become available, all of the preventative measures (i.e., wearing masks, social distancing, etc.) will need to remain in-place for years to come in order to beat this thing.

Not long ago, Amy, who works for a fairly large manufacturing company that does a great deal of work for United Technologies, learned that a coworker, located at an office in Florida, died from complications due to COVID-19. The coworker was a sixty-five year old male with no known health issues, and the virus killed him within two weeks of learning that he had been afflicted with it. Not good!

Up and until the time of the news of his passing, Kathleen had planned to return to classes when schools in our area reopened, but news of his death caused her to change her mind. Fortunately, the high school she attends has done a very good job with online classes and she has, in fact, been doing great academically. The bad news is that I have returned to driving a school bus and my family and I are now more exposed than ever to contracting the virus.

Management has formally indicated that, per CDC guidelines, drivers are required to open all of the windows on the busses when they are in operation — regardless of weather conditions — and, as one might imagine, many drivers have not complied. The heaters on all of the full-sized busses were never very good at keeping the busses warm under the best conditions, but add having to drive around with open windows in dark, damp winter conditions and most will find that transporting children to and from school has become a sloppy, uncomfortable mess that no one really wants to do. There are certainly better ways to earn a living.

So, for the moment, I am now holding-out hope that a vaccination is forthcoming and that I will not contract the virus before I am able to get vaccinated. In other words: I’m currently working on hopes and prayers.

an ounce of prevention…

When I was young my mom, who was a nurse, would often say: “An ounce of prevention is worth a pound of cure.” And those words, especially now, could not have more meaning for me. Over the past few years I have often told people that, when I pray, I’ve learned to thank God for all that I have and, perhaps, even more importantly, for all that I don’t have — like a serious illness.

When it comes to Lyme disease or any of the co-infections that are transmitted by those nasty little creatures called “ticks,” there is nothing better for one’s health than to never get bitten in the first place.

A couple of days ago I came in from cutting our lawn, after doing a little weeding of our gardens, and I pulled a tick off the back of my neck, underneath my hair. Fortunately, by the grace of God, and any of the other powers-that-be who watch over me, it had not yet embedded itself in my neck. The part, however, that most disturbed me is the fact that my family and I reside in a very suburban area of the country with no woods located anywhere near our home. Even more disconcerting is the fact that I discovered the tick after I had showered and washed my hair, twice!

After I removed the tick I crushed it with the handle end of a spoon. I then wrapped-up the remains in some cellophane tape and then placed the tape in a zip storage bag. I wanted to keep the tick for a few days just in case I became ill so that I could have it tested for any diseases should I fall ill. Fortunately, I did not get sick and I was able to discard the bag. Even now, however, the thought of the thing on the back of my neck makes me cringe.

Once I had stored the tick I went back upstairs and took another shower. This time, however, I scrubbed my scalp and my entire body with a brush, just to be certain that there were no other ticks on me. I have no idea where the thing came from, and I don’t know if, perhaps, it may have crawled off our dog onto me. Regardless of how it may have found its way onto my person, the thought of having it on me and inside our home makes me very uncomfortable.

So, what can you do to protect yourself?

For quite some time the thinking was that a tick had to be attached to its host for at least forty-eight hours for a person to become infected; but that thinking has changed, especially since some ticks have been found to be infected with the Powassan virus. With Powassan, a tick only needs to be attached to the host body for fifteen minutes for the host to become infected — and that’s really scary!

Therefore, the most important thing that you can do to avoid being bitten is to not roll out the welcome mat to the little invaders. For one thing, try to avoid areas known to harbor ticks, like wooded areas. And, if that’s not possible, try some of the following:

01

off! deep woods (deet)

Though I’m not a big fan of putting chemicals on my body, the most effective way to keep ticks off of you is to use products that contain DEET, like “OFF!” I use it whenever I work in our yard, and I have gone as far as to also spray my clothing to make certain the bugs stay away.

02

olay moisture ribbons plus LAVENDER oil

Olay Moisture Ribbons Plus Shea + Lavender Oil Body Wash, 18 oz ...There are certain scents that the bugs hate and lavender is one of them. For my daughter this product has been a godsend. She likes the smell and she told me that she found it to be very effective at keeping the bugs at bay.

03

avon skin-so-soft bug guard

Skin So Soft Bug Guard Plus IR3535® Gentle Breeze® SPF 30 Lotion ...Another product that does a good job at keeping the bugs away is Avon’s Skin-So-Soft with Bug Guard. The company offers a variety of sprays and lotions, and the one pictured to the left also provides SPF 30 sunscreen protection.

04

bath scrub brush

For ticks to transfer diseases they have to be attached to your body for some period of time (depending on the disease), and, other than keeping them off your body entirely, the next best thing is to ensure that they don’t remain on your body for long with a shower scrub brush.

A couple of final tricks that you can employ is the use of garlic and permethrin. For many years our ancestors would use garlic to keep bugs away. They were very well aware of the fact that garlic is a powerful natural insect repellent and they would eat garlic daily and keep garlic cloves in their homes, especially around bedding, which were usually made of straw or hay — a very common place for bugs to nest.

The benefit of permethrin is that it actually kills ticks and mosquitoes by disrupting neuron functions. Permethrin is an insecticide in the pyrethroid family. Pyrethroids are synthetic chemicals that act like natural extracts from the chrysanthemum flower. Products such as Sawyer’s Premium Permethrin Clothing Insect Repellent are applied to clothing and claim to be effective for up to eight washes in the laundry. Please note that these products are NOT MEANT TO BE DIRECTLY APPLIED TO ONE’S SKIN. And, as always, be sure to follow manufacture’s instructions whenever using any of the aforementioned products.

For me, personally, I take one Nature’s Bounty 2000mg Garlic tablet each morning; and I use Deep Woods Off! whenever I work outside. After gardening or or cutting the lawn I will go into our mud/laundry room, strip down and immediately wash my clothes in hot water. I will then go upstairs to take a shower and scrub my entire body, head to toes (including my scalp), with a soft bristle bath brush.

In the world of computers it has been said that “The only safe computer is the one not connected to the Internet.” And the same holds true for Lyme disease: the only true way to protect yourself is to ensure that the bugs never connect themselves to you!

WHY IS LYME DISEASE SUCH A BIG DEAL?

As I quickly approach my sixth decade of life, and as I look back at my childhood, I can see just how lucky my generation was to have lived during a time of relative peace and prosperity. The Vietnam War began five years before I was born and, as a young boy, I was completely unaware of the seriousness of the conflict. Each evening my dad would sit down in front of our Zenith Space Command console TV and flip through the national news broadcasts to try to stay up-to-date with the latest world events; and to this day I still can recall seeing news clips about our young soldiers of the time engaged in jungle warfare. I also remember watching the Bob Hope Christmas Specials each Christmas. The show ran from 1964 to 1972 and it was an annual event that was eagerly anticipated by both the troops and American families. But, the seriousness of the war was lost on this once young, naive child. I lived under the premise that we, as a species, had conquered all of the most dreadful hardships that the world had to throw at us, and that we were equipped to deal with anything the powers-that-be had in store for us. We had defeated measles, polio, Nazism, and we were witnesses to humankind lassoing the moon, as George Bailey would say. It was an unbelievable accomplishment. And, so, what was left? Well, for one thing, Lyme disease and then some.

It’s been said that “time heals all wounds,” but that is only true if the wounds do not lead to one’s demise or permanent disability; and, for me, seeing my one and only child so sick was completely debilitating. She was such a happy-go-lucky child who was always laughing and smiling. Then came Lyme, and she was robbed of her happiness and a large part of her childhood.

Three years earlier, Amy had been diagnosed with stage one breast cancer and the dreaded BRCA2 gene mutation, and I was nearly paralyzed with fear. I was terrified by the thought of losing my one and only true friend in life and the mother of our one and only child. I was also overwhelmed with concerns about how I would care for Kathleen, especially given that Amy is the “breadwinner” of our family. Fortunately, though, thanks to modern medical technology, some surgery and six months’ worth of chemo treatments we were able to put the fear of cancer behind us in a relatively short period of time. For our entire family, however, Lyme disease has been a completely different beast: and, for me, personally, Lyme has pervaded every aspect of my life.

In her extremely well researched and well written book, “Bitten: The Secret History of Lyme Disease and Biological Weapons,” Kris Newby lays out a plan hatched by then Attorney General, Robert F. Kennedy, and his brother, President John F. Kennedy, whereby they intended to use ticks infected with non-lethal biological agents to put a majority of Cuban sugar cane workers out of work in order to disrupt Cuba’s economy and, thus, rid Cuba of Fidel Castro and his regime. According to Newby’s account, Bobby Kennedy wanted to disrupt the Cuban people’s lives and their ability to earn a living. And the only thing that I can say in defense of the Kennedy brothers is that they never gave any thought to the idea that the problems they created for the Cuban people may one day become our problems as well . . . and it’s not much of a defense!

The diseases that have so negatively impacted my daughter (i.e., Lyme, Bartonella and Babesiosis) almost completely destroyed me and my family. She has suffered tremendously, physically and emotionally; and my wife and I have suffered enormously from stress and the financial issues that have arisen from treatments and from all of the 911 calls that we made when Kathleen suffered major seizures. Almost overnight, our home went from a very happy, peaceful and secure place to one of tremendous tension and chaos.

In her book, Newby reveals information that she uncovered within the research documents of Wilhelm “Willy” Burgdorfer, the Swiss born medical researcher who is credited with discovering the Lyme spirochete (i.e., the bacteria) which causes Lyme disease. Newby also includes information gathered during several personal interviews with Burgdorfer; and the most disturbing information that she gleaned was that Willy was actually a biological weapons researcher for the U.S. Government.

For years Willy worked to perfect techniques for infecting ticks with a host of bacterial agents that, when introduced into the human body, would incapacitate the individual. And though, at first, they were not intended to kill people, many of them do eventually kill their hosts over that which can be a very long, drawn-out and painful period of time.

As I sit to write this post, U.S. citizens have been suffering through the COVID-19 pandemic and the virus has done more than kill people and make them extremely ill, it has widened social fissures that have long been ignored. The “Black Lives Matter” movement has, justifiably, gained steam and numerous confederate statues and landmarks, which memorialized former slave owners, have been vandalized, completely destroyed or torn down entirely. People have had enough and they are no longer willing to tolerate such false gods or Robber barons. And much like the evildoers of the past, I believe that Willy, and people like him, will come to be equally loathed. Personally, I believe that for us to honor Burgdorfer for discovering the bacteria — especially when it was he who worked so hard to weaponize it — is an absolute sin! His name should go down in the annals of history as one of the more evil people who ever existed.

Though Willy may have made a halfhearted attempt to redeem himself by providing Newby with certain half truths prior to his death in 2014, I will never hold Burgdorfer in high regard — nor will I ever forgive him for his dastardly deeds! He, and those like him who have worked to the same ends, have caused countless innocent people almost unimaginable suffering; and, much like those who have, deservedly, earned so much scorn for the suffering they caused during slavery and the Jim Crow era, today’s villains deserve the same level of contempt for the evil deeds that they have committed.

Colloquially speaking, Lyme is a very big deal because of the overwhelming amount of suffering that it causes; and the best way to beat it is to ensure that you never host it.

 

 

 

 

 

 

 

True courage is in facing danger when you are afraid.

— L. Frank Baum

Kathleen had her first major (i.e., grand mal) seizure on Saturday, December 12, 2015. She was formally diagnosed with epilepsy the following Monday, December 14, 2015; but, if that news was not bad enough, at around 7:00 p.m. on the evening of Saturday, December 26, 2015 — the day after Christmas! — two young, male police officers, a middle-aged, male detective, and a middle-aged, female DCF agent, showed-up at our home’s front doorstep.

 

After we were discharged from the hospital on the evening of the 12th I found myself to be in a daze for several days. My mind was spinning out of control and I felt completely lost. Little, however, did I know how much the situation was about to change — for the worse!

Kathleen’s middle school had planned a dance for the early evening of Friday, December 18, 2015, just before it was scheduled to close for the Christmas break. Concerned about the possibility that Kathleen may have a seizure while at the dance, my wife, Amy (also an alias), offered to be a chaperone. Amy, who is a second generation Irish immigrant behind her father, knew the school’s counselor, who was also a former DCF agent, from our local Irish club. Amy had a conversation with the counselor, whom I will refer to as Cathy, and Cathy suggested that we have Kathleen tested for Lyme disease. Cathy told Amy that her family had a vacation home located near Lyme, Connecticut, and that her brother had been afflicted with Bell’s Palsy, which occurred some time after he was bitten by a tick. Cathy also told Amy that Kathleen’s symptoms sounded like classic Lyme disease and that it would be a good idea to have her tested.

As soon as Amy told me about her conversation with Cathy I jumped into action. First, I placed a call to Kathleen’s pediatrician’s office to inform her doctors of the situation and to ask if they would be willing to order a Lyme test. Fortunately, the doctor to whom I spoke was amenable to the idea, which, given all of the controversies surrounding the disease, was a big deal. I took Kathleen to have her blood drawn and then delved into learning all that I could about the disease; and much of what I discovered was terrifying!

Somewhere around midday on December 24, 2015 I received a call from the pediatrician who ordered the lab tests. The doctor told me that Kathleen tested positive for Lyme disease and that we should start her on antibiotics. After receiving the diagnosis I actually felt somewhat relieved and hopeful. We now knew what was actually wrong with her and could move forward with a treatment that would rid her of all of her problems . . . or so I thought. Unfortunately, however, I did not fully appreciate or grasp the scope of the diagnosis.

During the very first evening that Kathleen started the antibiotics she had a bad Herxheimer reaction (more on this later) but, fortunately, she got through it. Eventually, I found a Lyme Literate Doctor (LLMD) in our area and also stumbled upon the documentary “Under Our Skin.” And, after viewing the documentary (more than once), I became utterly horrified!

I began sending e-mails to our local children’s hospital to express my concerns and, when I was told that, essentially, the people there did not believe that Kathleen had Lyme disease and that they would not treat her for it, I, basically, told them that they had been negligent — something that they obviously did not like hearing.

One of the hospital’s office staff members, who was not present when Kathleen was examined by the ER doctors, was tasked with dealing with the situation. She responded to my concerns/complaint by filing a fraudulent DCF complaint against me; and in the complaint she claimed that I told the doctors that I wished that I had a “Magic Bullet” to shoot them with so as to make them more empathetic. She also purported that I claimed to believe that the “Newtown shootings were a hoax.” Neither of which was true.

In my defense, I argued that, in our home state of Connecticut, hospital personnel are considered “mandated reporters” and that if the doctors and staff had released us — or, more specifically, Kathleen — from the hospital if I had actually made those horrific claims that they would have been even more negligent than I had claimed. I also provided the DCF agent in charge of the investigation with a copy of a poem and a letter that I sent to each and every one of the Sandy Hook families two years after the tragedy occurred, which clearly indicated the sorrow that I felt for the tragedy that they had to endure.

Following a grueling twelve week investigation the hospital’s claims were found to have no merit and the case was dismissed as “UNSUBSTANTIATED.” In the end, though I was relieved that the case was dismissed, it took a very heavy toll on me and my family.

One of the most important lessons that I learned from the experience is that the controversies surrounding Lyme disease are extremely real and should never be taken lightly — a point further reinforced by the original Under Our Skin Documentary.

Eventually, I also would learn how fortunate we were to be living in one of only six states at the time that had enacted laws to protect doctors who were willing to treat patients with Lyme disease on a long-term basis with antibiotics.

Bottom Line: If you or a loved one are one of the unfortunate many who has been afflicted with any of a host of tick borne illnesses then you will need to be extremely careful about how you proceed — especially if you live in a state that does not recognize Lyme as a “real disease.”

That said, you should also take comfort in the fact that times are changing, thanks in large part to the number of infected people who are now speaking out. You should also know that there is so much more information regarding naturopathic treatments that is readily available to patients .

 

 

my oh my how times have changed


Since Kathleen became ill I have had countless conversations with people where, like so many generations before us, we talked about “the good ol’ days.” During many of my conversations I have recalled the times when the kids of my generation would simply press on the raised rash that formed from mosquito bites with a fingernail to try and “make the itch go away.” For today’s children, however, it is an entirely different situation.

 

Kathleen was bitten by a tick while attending a well-known and rather upscale local summer camp, and the part that makes the situation totally and completely disconcerting for me is the fact that her counselor, a mature forty-something year old woman, took Kathleen and four or five other campers on a hike on a “secret” (i.e., restricted) trail.”

 

 

 

 

 

Not long ago Kathleen told me that a number of young boys wanted to go exploring on the trail but that they were forbidden from doing so because they had been told by other counselors that “there [were] bad things down there.” And, so, if the counselor who led my daughter on that ill fated hike had done her job, my family and I would have been spared a trip through hell.

For me, I have had to deal with the feelings of guilt; knowing that if had paid attention to Kathleen’s concerns and had her treated sooner then we would be in a much different place right now.

 

 

And, so, this is, without question, the most important advice that I can offer anyone reading this: Don’t get bitten, and don’t ignore the signs if, unfortunately, you are bitten!

Kathleen had a rash on her upper, right thigh and she (even at the tender, young age of eleven) knew that something was dreadfully wrong; but my wife told her that it was probably just a bad mosquito or spider bite, given that it was not shaped like a bullseye. BUT, not all tick bites lead to a bullseye shaped rash!

Knowing all that I know now, as soon as my wife uttered the word “Lyme” to me alarm bells should have gone off inside my head; however, she told me that, when she was a kid, she used to get bad rashes from mosquito and spider bites, and, so, I simply discounted the rash on Kathleen’s leg to genetics. Boy, was I wrong!

Even when Kathleen was formally diagnosed with Lyme disease, I did not get overly concerned because many years earlier, before she was born, we had a dog that was afflicted by Lyme disease, due to a tick bite, but ten days on antibiotics and he was back to his old self. Here, too, I now know how wrong that line of thinking was.

The bottom line is this: You can never be too cautious when it comes to bug bites. Do all that you can to protect yourself and your loved ones with bug sprays that contain DEET. When Kathleen was younger, I purchased natural spays and lotions for her to use but I’m not so sure they worked as well as the products that contained DEET.

More recently, however, I have found that OLAY’s MOISTURE RIBBONS PLUS SHEA + Lavender Oil works really well on Kathleen. She told me that the bugs no longer have any interest in her, and she really likes how the lotion smells.

Her pediatrician also recommended the line of bug repellent products produced by Avon under the Skin So Soft label, which others swear by. In any case, find something that works for you and be sure to use it whenever venturing outside, because today’s bug bites can cause so many more, and more serious, problems than just an irritating itch. Put another way: We are now living during a period of time when so many of us have been forced to deal, directly or indirectly, with Lyme.

Cherish Each Moment

Sometimes you will never know the value of a moment until it becomes a memory.

– Dr. Seuss

 

Nothing could have prepared me for the challenges that my family and I were about to face. Life before December 12, 2015 was so different from the years that would follow; and, since then, I have come to hate the number twelve as much as I hate the number six.

My wife, daughter and I spent several hours in our local children’s hospital emergency room and during that time not much was done. Kathleen was examined by three doctors, two women and one man who, at the time, served as the chief ER physician. All three performed the same basic tests: they looked in her throat, in her eyes and checked her heart rate. At one point a technician came into our room to perform and electrocardiogram (ECG or EKG) on Kathleen but at no point did anyone talk to us about performing any lab or blood tests.

As the son of a family who served in the medical profession, I was equally disturbed by the fact that no one offered to perform an electroencephalogram (EEG) on Kathleen. When I asked the doctors if they could perform the test on my daughter I was told that they couldn’t because there was no one there “to run the machine.” And I received the same response when I asked if they would perform an MRI.

Ultimately, the doctors consulted with an on-call neurologist who, over the phone, without ever examining Kathleen, determined that she had an epileptic seizure and that she would need to be put on the broad spectrum antiseizure medication, Keppra.

Fortunately — thanks to technology — I was able to pull out my phone and perform a search on the medication; and, when I did, I almost came out of my skin. At the top of the list of potential side effects was suicidal ideations and that was pretty much all I needed to see to then express my concerns with the diagnosis (or, more precisely, the lack thereof).

Individually, all three doctors came into our room and had me explain my concerns and my opposition to putting Kathleen on the medication. After a fair amount of debate, the lead doctor told the others that he was okay with releasing us and having having Kathleen seen by a neurologist as soon as possible. By that point my mind was spinning and I had trouble believing that my precious, previously very healthy child, had, within a matter of hours, become an ‘epileptic.’

 

 

 

 

our trip through hell begins

It was an overcast, rainy day on December 12, 2015. My wife had been helping our daughter, Kathleen (not her real name given that she is still a minor), study for a sixth grade science test. She was surprised that Kathleen had trouble remembering information that just the day before she remembered with ease.

She sensed that Kathleen was tired so she told Kathleen that it would be best if they both took a nap and then started fresh. When they awoke Kathleen seemed a bit confused and then wet herself.

“God only gives us what we can handle. I just wish He didn’t trust me so much.”

AMD

It was around this time that I decided to take a shower before dinner when I heard my wife let out a blood curdling scream: “Per, Per (short for Perry), there’s something wrong with her!”

And for anyone who has experienced real tragedy then you will understand when I say that I immediately knew that that I was about to witness something horrible.

I jumped out of the shower and threw on a pair of underwear as quickly as I could and when I entered the bedroom I found Kathleen laying flat on her back on the floor. Her broken glasses lay on the floor, approximately five feet from her left foot and I could see foamy blood coming from her mouth.

I thought she was dead.

Luckily, and by the grace of God,, Kathleen came too. By then police, paramedics, EMTs and three ambulance personnel made our somewhat spacious master bedroom suite seem rather cramp. We told them that we wanted to have Kathleen transported to our local children’s hospital to have her evaluated … and so began our trip through hell.