Two very honorary guests on the blog today — my incredible parents!!
As far as support squads go, it doesn’t get much better than these two. The gratitude I have for the way my parents have stood beside me through my health journey truly has no bounds. A few weeks ago, they attended a conference at Stanford to continue their lyme research and my mom (aka momager), in true #momager form, was kind enough to type up a recap to share with you all.
A lot of this information was new to me, and it filled my heart with hope to hear from them about the passion and drive that lyme disease researchers and doctors are bringing to the table.
Battling lyme disease can feel confusing and hopeless, but was is a reminder that there is so much to be optimistic about. That there is community of professionals and advocates fighting tirelessly behind the scenes for a recovery that will one day be available.
We are the parents of an adult daughter who, after more than 10 years of declining health was diagnosed earlier this year with Chronic Lyme Disease. It is our belief that she was infected many years ago, and is one of the many cases where there was never a bulls eye rash, or any other clear indication that we should look into Lyme as a possible cause of her varied symptoms. Due to her own dogged pursuit of answers, she spearheaded the investigation of Lyme infection and as it turns out…after exhaustive testing by the most cutting edge lab in the country, she has clear signs of infection, one which is extensive and which her body has been trying to combat for a very long time.
Since her diagnosis, we have endeavored to learn everything that we possibly can about this misunderstood and yet very serious disease. In that effort, we attended a conference over the weekend of September 14, 2019 at Stanford University. The conference was entitled, Emerging Research, Diagnosis and Treatment of Lyme Disease and Tick-Borne Illness. It’s predecessor conference was held in Boston in 2017.
These are some of the things we learned about:
1. Lyme Disease is relatively new
It was less than 45 years ago (1975) when children presented with symptoms similar to rheumatoid arthritis that could be traced to tick bites. Seven years later, spirochetes were identified and Lyme disease started to garner attention from the medical community. Subsequent engagement by researchers and clinicians has been laudable but understanding and treating this disease is still in its infancy.
2. Ticks are adept travelers
It was surprising to learn how well ticks travel. I always thought that ticks presided on deer. Hosts in the wild, however, are many and include the western grey squirrel, dusky footed wood rat, blue belly lizards, and the brush mouse. More domesticated hosts include pet dogs and cats. Many Sierra Nevada vacation cabins are hot houses for ticks as chipmunks and other rodents nest in the walls of rental destinations. Living adjacent to a large open space on the California coast, I became aware of the importance of keeping field mice out of the house, locating firewood piles away from the house, inoculating my dog and generally establishing a perimeter of safety between my home on the open space fields with animals that host ticks.
3. Tick Borne Illnesses are not just from Borrelia Burgdorferi
Borrelia mayonii, Borrelia miyamotoi were featured as two tick borne diseases emanating from the Midwest. The multiple pathogens that ticks carry increase the complexity of identification and diagnosis and treatment of Lyme.
4. Genetic Sequencing is a spearhead for news of avenues for diagnosing Lyme
It is amazing to think that the human genome was mapped just over 20 years ago. Research based upon sequencing has accelerated Lyme detection and diagnosis methods. This “lab bench”, not even built a few decades back, is critical to the advancement of diagnosing and treating Lyme.
5. Controversy between PTLDS vs. Chronic Lyme
Post Treatment Lyme Disease Syndrome is the new “in” word it seems. We had not heard this new term until presented with it at the conference. It was pointed out that labelling it a “syndrome”, can lead to the medical community being able to claim that it is really a mental health issue, a “syndrome” or “disorder”, not a diagnosis which can be clearly shown through scientific means. It brought to mind the early medical practice of diagnosing women with medically based issues and pain as “hysterical”.
By classifying Lyme as a “syndrome”, it becomes harder to attract research dollars, and to focus attention on Lyme disease, a biologically based bacteria that invades the body and wreaks havoc with its host. If Chronic Lyme is to be replaced, it should be named PTLD (Post Treatment Lyme Disease). The word “syndrome” should be eliminated.
6. Late Stage Lyme Disease can present in a myriad of ways making diagnosis and treatment just that much more of a challenge!
Some of the ways that were described, I had already learned or heard about from other sources. Because of my daughter’s own experience, I knew that Lyme could cause:
Neurological issues such as migraine, brain fog, vertigo/dizziness
GI issues (digestive troubles, nausea, food sensitivities)
Some of the other things I learned at the conference included:
Small fiber neuropathy
Mental health issues such as depression
7. The Good News/Bad News Story re: Research
Several speakers described the myriad of research projects being undertaken all over the country and we found great hope in knowing that each day, progress is being made towards a better understanding of, and thus better ways of treating Lyme disease. However, it was discouraging to hear each one of them talk about how most of the work being done is in its “early stages” or in its “infancy”. Though not a main focus at this conference, there was some mention of the inadequacy of the funds being allocated to researching this disease given its increasing, widespread and very serious results when not caught early (which happens all too often).
Finding a way to control the spread and to ultimately find a way to effectively combat Lyme is going to take a movement just as powerful as the one that funneled millions of dollars and focused public awareness and education on the AIDS virus and probably stopped its spread to millions more people. We must do the same for Lyme.
8. Once you have a diagnosis, what do you do?
There was hopeful news from Dr. John Aucott, MD who is the Director of the Johns Hopkins Lyme Disease Clinical Research Center. He highlighted some of the groundbreaking research they are doing there to not only improve testing for Lyme, but also to find new treatments to either manage or perhaps even lead to a cure for Post Treatment Lyme.
Prior to attending the conference, it seemed from our research that IV antibiotics were a necessity and presented the best hope for battling the nasty little spirochetes that love to hide and are amazingly adept at doing so. This conference broadened that perspective as we listened to evidence that, in some patients, IV antibiotics do not prove to be helpful. There are other approaches, such as the use of oral antibiotics and anti-inflammatories which can be effective. In addition, there are medications such as nortriptyline and gabapentin which can be used for symptom control. We were heartened to hear that there is research ongoing at George Mason University to develop an accurate urine test for Lyme.
After becoming disheartened about IV antibiotics, several other speakers, spoke about some successes that they were having in that area. Dr. Ying Zhang, also from Johns Hopkins, is using various novel combinations of antibiotics that have successfully attacked the bacteria and brought symptom relief to his patients. Again, this is not a cure, but a way for many of his patients to return to an acceptable quality of life. He also spoke about some of the non-traditional methods of managing the symptoms of Lyme, such as the use of essential oils. Again, I was pleased to see that, especially in the case of chronic Lyme, once properly diagnosed, there are a myriad of things to explore.
We were glad to see that there are organizations such as this one which are gathering the data which will prove to be essential to mount an assault on this disease in order to stop its slow march towards becoming a full blown public health crisis. Liz Horn, PhD, MBI, presented information about the Lyme Disease Biobank. This program will provide researchers with blood and urine samples from patients with acute Lyme disease from multiple regions across the country. The purpose of the program is to alleviate one of the barriers to research; the lack of samples from people confirmed to have Lyme disease. The program was launched in 2015 and is ongoing.
The CDC has stated that Lyme is the fastest growing, vector-borne disease in the U.S. and yet, it currently receives very little government funding. The goal of Bay Area Lyme, is to “accelerate the pace of new drug and diagnostic development in order to alleviate the suffering of millions.”
Their mission is to “make Lyme disease easy to diagnose and simple to cure”. We are certain that every person attending the conference shares that vision. We absolutely do!
10. Final thoughts
As the parents of an adult child (now 27), who have watched our child’s health decline over the past 7 or 8 years, who have seen her go from a vibrant, engaged, goal-oriented young girl, ready to blossom into adulthood and find her path in life — to her current reality, where she has to focus entirely on dealing with constant physical pain and managing a difficult journey through the maze of the health care system; we can barely describe the heartache, frustration and utter helplessness that we feel at times.
It took nearly five years of seeking answers from a myriad of doctors and alternative health practitioners to finally get the proper diagnosis. In addition, it was not any of those health professionals who even suggested that Lyme should be looked into. Rather, it was our daughter herself who tenaciously kept researching possible causes and connected with another young woman with a similar story. Through that connection, she was referred to an LLMD and after a thorough battery of tests, was diagnosed. Sadly, the disease had firmly taken hold, and her immune system was so badly compromised that treatment could not even begin until she was able to build up her immune system so it could tackle the daunting task of attacking the bacteria.
No parent should have to watch their child decline without any medical professional taking the time to take a thorough history and being willing to include diagnoses which may seem “out of the norm”.
No patient should have to find their own way to a proper diagnosis because of the controversy surrounding Lyme disease.
At this conference, we were grateful to see a large room filled with people all dedicated to spreading awareness and devoting their lives to finding better ways to treat this debilitating disease. We know that there are rooms like it all over the U.S. and all over the world. We do look back sometimes and feel anger and guilt about the fact that we didn’t catch this disease earlier, before my daughter was so ill, but we are reminded daily, as we learn and become more active in the Lyme community, that there are options and treatments available; something that was not true even 10 years ago.
Progress is being made every day and every patient currently battling Lyme is a pioneer! Our wish for each and every one of them is that awareness will continue to grow, research and testing will lead to better diagnoses and treatment, and they will have access to and coverage for the treatment necessary to combat their disease.
We are hopeful that our daughter, in partnership with medical professionals who finally “hear” her and most importantly….BELIEVE her… will reclaim her life!
Hope you found this as interesting as I did! And to my Mom and Dad — thank you from the bottom of my heart. I could not imagine going through this without your support and love.
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.