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.

 

 

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.