Commentary: Lymies – not so paranoid afterall
Anyone who has spoken to a person who has had Lyme disease (LD) or is still suffering from the disease is generally taken aback by how paranoid they are of the outdoors. They are generally militant about tick protection and overly cautious about grassy areas. So much so, you would think that they would be afraid to leave their house without being fully encapsulated in a suit of latex, or more appropriately referred to as a ProphylaTICK.
This paranoia is not without merit. Since the 80’s, the threat of contracting LD has been significantly underplayed. The warnings that Lyme advocates have preached have, for the most part, been dismissed as unproven scientifically. But, as the years go by, researchers are slowly confirming many of the warnings Lymies have been preaching all along. These include:
- Birds are the culprit, more so than deer, for bringing ticks into a region thus making any area vulnerable to LD;
- Negative LD tests and/or the absence of a bulls-eye rash are inconclusive as to determining that you do not have LD;
- The length of antibiotic treatment necessary for an individual depends on the individual and how long the individual has been infected prior to treatment;
- U.S. LD cases are grossly underreported and may be more than ten times higher than the official reported number of new cases (I.e. 30,000 annually);
- Ticks, other than the Deer Ticks, can also transmit LD;
- The majority of ticks carry LD-like illnesses so all tick bites should be suspect;
- LD can be transmitted to a fetus during pregnancy.
As time goes by, we can expect additional Lymie warnings to be confirmed. We can either take a few extra precautions now or face the devastating consequences. After all, in the world of ticks, paranoia doesn’t mean that they are not out to get you.
Stay vigilant, stay safe.
Rob
Lyme Handbook 
Rob, thanks for this post. People think I am paranoid because “there are no ticks in Southern California.” When I tell them that I know a person that was bitten in downtown San Diego and now has Lyme, they are absolutely stunned.
TPNY,
I know the feeling all too well. Just because the medical books are not up-to-date on LD, and many doctors have difficulty accepting that the patient may be more knowledgeable about the disease, doctors often claim that the patient is psychotic. To make matters worse, sharing these lessons-learned with friends and family, make us appear like Don Quixote fighting windmills. Regardless, warning others to avoid the hardships we had to unnecessarily go through with this disease will be my mission. Some will heed our warnings; the others just might join our plight.
All the best,
Rob
So true. I am originally from New England, and I truly believe that eventually every person up there will have Lyme. Even there, people thought I was paranoid about tick prevention and protection. Since then, I have learned a couple of the people that looked at me funny now have Lyme. Surprise, surprise.
Rob,
My brother was diagnosed with ALS in April 2015 but has since gone and is being treated by a LLMD. At first the weakness in his foot subsided but has since returned (he can’t flex his foot) and his speech & brain fog has never really subsided but they actually get worse after he takes the antibiotic. The LLMD encourages him that it is the “herxing” he is experiencing since the lyme is dying. I am convinced he is battling LD but since a “renowned” neurologist told him he has ALS and then it was seconded by another neurologist that merely looked at the firsts test results, my brother is haunted by the diagnosis. Do you think the neurological community will ever acknowledge the information from even 2 years ago is outdated???? Their words have consequences!!!!
Jackie,
I’m very sorry to hear about your brother’s situation. It is extremely hard and frustrating when doctors are not willing to entertain the possibility of Lyme. Have you found a good LLD?
As I am sure you’re well aware, ALS has no known cure. LD is a much more prudent avenue to take until completely proven negative.
Essentially, you and your brother are left to self-diagnose. Though we tend to be overly optimistic when evaluating ourselves, if you see some improvement, why would you change course?
I know for myself, I was diagnosed with MS for decades while my neurologists insisted that I do not have Lyme. Regardless, I sought out Lyme specialists and treatments. Although my recovery was painstakingly slow, I did see improvements and stayed the course. Today, all of my Lyme symptoms have cleared up, including dementia, vertigo, vision problems, Insomnia. etc. Unfortunately, the nerve damage that I incurred over the years has been extremely slow to recover. I remain hopeful, and very relieved that all the other problems are healed. Additionally, it has been a few years since I last Herxed which leads me to believe that my body has fought off the Lyme.
As far as the medical community goes, I would think that until they are better versed in the disease and how best to profit from it, they are going to flounder. There is another possibility. If the CDC or other organization might determine that it is transmittable between people (e.g., s sexually), and therefore will pay much greater attention to alleviating the problem.
All the best,
Rob