It's been awhile since I've posted for various reasons but as I've watched our son feeling so well this summer and last, I got to thinking and then reading online about the seasonal and cyclical changes those with Lyme and tick co-infections often notice throughout the year as well as based on the moon's cycles.
While anyone who has investigated Lyme online realizes that for every person with tick diseases, there is a unique story individual to that person which can vary greatly from that of the next Lyme patient. However, there are often trends both in individual patients with their own symptoms cycling, and among groups of patients.
In particular, there are many stories online by parents of teens who find their child feels better, often significantly improved, during the summer months. For a few short months, some, but sadly not all, of our seriously ill children are mostly living normal lives! This is a joy but we also know that it is probably short-lived. It takes a lot of mental strength to bury our concern for what symptoms will rear themselves this fall, winter and spring.
For our son, the past 2 summers have meant none of the crushing chronic fatigue and fewer daily fever cycles. His breathing is still a significant issue but he can still get up and outside which is absolutely impossible if he's completely unable to move beyond a short trip to the bathroom across the hall from his bed.
Starting no later than October, old symptoms return with a vengeance and this continues until the following May or June. For our son, this also includes a return to the effects of a full moon or a longer period of chronic fatigue for a week or so every 20 - 22 days.
This winter will be interesting because he will have been in treatment for almost a year and we hope to see a lessening of his winter symptoms which have been quite bad the past two winters. He was expected to be quite sick this summer with his current treatment regimen but aside from 2 days of fatigue and a short-lived knee flare of 3-4 days, he has been doing well with his Lyme symptoms with little or gradual change, however, in his co-infections symptoms.
There is speculation that access to:
Our pediatrician gave us a cryptic warning when she called with our son's positive Lyme test results - it "may" get worse before it gets better. No specific details of what exactly this entailed were given other than it will probably take weeks or months for the knee swelling to decrease and a second round of antibiotics may be necessary. We soon learned why the hard way, as I suspect most parents of kids with Lyme do unless they've already battled Lyme before. We had only dealt with the short courses of antibiotics for Lyme that caught in the first days after the tick bite on an adult which meant at most flu-like symptoms of short duration.
I think parents of kids with late stage Lyme (any infection more than 1 month old) must be warned that the floodgates are probably going to open and a torrent of new symptoms will flow out along with a worsening of the current ones. I also think most medical professionals have no real knowledge of this aspect of the treatment nor of co-infections. Patients and families are left on their own to discover they have not one, but multiple, hard to resolve infections.
Most people with late stage Lyme actually have developed multiple tick infections as the cesspool from the tick entered the body and over time other bacteria and protozoas, not just Lyme bacteria, have taken over. These various infections co-exist in a symbiotic way as they multiply unknown in the body over months and years before the diagnosis occurs if borellia bacteria was initially missed.
The regimen of daily antibiotics seemed to push down the load of Lyme bacteria as it is supposed to which then allowed new infections to rise up and make themselves known. This can cause a lot of herxing as the body tries to shed the the dead remnants. For more information on what to expect, be sure to check out TiredofLyme.com's The Good Days and the Bad Days article.
If you are pretty sure that your child's infection is over 1 month old, the fallout from the treatment means that you will probably have to focus on the following in the days immediately after beginning antibiotics:
That's the question our teen son asked me last night out of the blue while I was reading with him before bed. It wasn't the first time he'd asked it though.
If your child is old enough to use Google and has access to the Internet or has friends who use it, you should expect to get this question and if possible, plan your response in advance.
The first time he asked it was right after I picked him up from school. His dad had texted him his test results so he'd finally know what was wrong. It was the end of the school day when he got the news but between the time he received it and I picked him up 45 minutes later, he had googled Lyme disease and read that you can die from it. He jumped into the car and said in that droll tone that teens often have, "So, I read you can die from Lyme."
Phew - I sure wasn't expecting such a statement. At that point in the journey, I had only a cursory knowledge of the disease and everyone I knew, including my husband, his father, had been treated right away with success, even after repeated bulls-eyes from bites. However, I then recalled all the obituaries I'd seen about people dying from "long-term complications caused by Lyme disease". Normally I don't read the obituary section very often, but the Lyme ones in our area always seem to have a large photo of a youthful, sporty and outdoorsy person and for some reason my eye is drawn to reading them, and I noticed that more than a few of those in the photos had died from complications of the disease.
Anyway, after the initial panic, I took a deep breath and quickly said, "Well those people who died had Lyme disease for many years and didn't get it diagnosed and treated right away. Lucky for you and us, we caught it early, in just a year and half, not decades like those patients. You will be treated and beat it." He let it go at that and we then discussed what the pediatrician had recommended for treatment.
I figured it was a bit like all those birds and bees talks where you try to find out what they are really looking for and then give out the relevant information, building and expanding upon it over time. I think with this question about death, kids are mainly looking for reassurance but as any parent of a teen or a precocious younger child knows, they can read between the lines really well so you'd better have a solid response prepared along with the reassurances.
And after my jarring experience, I recommend you and any adults regularly around your child think about how they'd answer it, preferably before the question is asked. You'll want to take into account:
Once you hear the "am I going to die" question, consider the following as you prepare to reply:
Let me know if you've had to answer this question and what you recommend to others.
It is day 20 which means it's a "sofa day" here in our household. Every 20 days, like clockwork, our son suffers from extreme, completely debilitating fatigue along with his usual daily symptoms, like fevers and breathing difficulties. It usually starts 2-3 days before day 20 with fevers that start cycling every 10 minutes - up and down, up and down in the afternoon or late day along with horrible chills. He will also have early evenings of the same fatigue but usually can get up the next day and make it to school, albeit late, days 18-19, but day 20 is when it becomes impossible to do more than go to the bathroom and return to his spot on the sofa. Sometimes his appetite will wane again on those days too.
So what causes these predictable cycles of his illness? Is it the Lyme, babesia or mycoplasma?
It appears from my research it is the Lyme, which tends to cycle around 21 days for men while more often following the menstrual cycle of women. Some patients also report their cycles correspond to the moon's cycles, particularly when there is a full moon. This is not to say that patients don't also suffer from daily flares which for many occur in the late afternoon. If there are multiple co-infections going on at the same time, one can expect there to be several flare cycles. So far, for our son, the Lyme flare is the most pronounced. I have read that the flare, or worsening of Lyme symptoms is due to a monthly die-off of Lyme bacteria and the body goes into a Herx as it tries to get rid of the ensuing debris from the die-off.
Over time, these monthly flares should lessen in severity if a patient is being treated. If the flares remain the same, it is time to discuss reconsider the treatment plan and dosages with one's LLMD.
So how can you figure out your child's flares?
By keeping a Lyme journal, which is what allowed us to figure out our son's Lyme flares. We are now focusing on comparing each day 20 to the day 20s before it to see if there is any noticeable improvement. I cannot stress enough the usefulness of charting your child's symptoms to see what's improving, what's new and what's disappeared from the scene. We do not fill in our spreadsheet daily lately, but I do get an overview of the previous week from our son and make a few notes about new symptoms, lessening or strengthening of current symptoms and noting any that may have gone away.
At only 4 months into treatment, there aren't many that have gone away yet - just the cough, drenching night sweats and a note that fevers seem to be less intense and perhaps a little bit less frequent - woohoo! Others have worsened though including breathing and joint and tendon pain. This is to be expected in early treatment. I liken treating Lyme to peeling back the layers of an onion. As one layer gets removed via treatment that is starting to work on the infection, another layer emerges full of its own new symptoms and perhaps even a lab or clinical diagnosis of a new infection occurs. With our son's infections, we still seem to be peeling through the onion layers.
If your child is of school age and attends public school, you will most likely want to consider approaching your school counselor and requesting a 504 plan (good for 3 years and reviewed each year) be put into place. A 504 plan helps students with disabilities receive appropriate accommodations for learning. Our son's school has been very willing to work with us to keep him in school at whatever level he is able to participate and in fact, encouraged the 504 when they heard about his illness. They said they have not had a lot of students with late stage Lyme disease but many staff and faculty had heard of it or knew friends and family who have struggled with it. This is not always the case though and much probably depends on where in the US you are located. We are on the eastern seaboard where Lyme is very prevalent.
Because our son's symptoms are mostly invisible when he makes it to school, I made sure to take in a handout of symptoms school officials, nurses and faculty should be aware of and I made some brief comments to the deciding panel about some of his more major symptoms at that point in time and stressed that due to the unpredictable nature of both the diseases and healing that they would likely change over time. I also had a note from our LLMD which listed some possible accommodations including more time on classwork and tests, opting out of a test last minute even if in school the previous day (due to extreme fatigue some days after school) and sitting out of physical education classes as needed.
I explained that our son would rather attend school and get his work done on time but that he often comes home and collapses and every few weeks is too ill to attend school. A smaller committee took all of this into consideration, discussed possible future directions of the illness with me and together we came up with a short list of accommodations. Because of cognitive and behavioral changes with Lyme and tick diseases, I requested that a line was included that mentioned teachers should notify counselor and parent if any appear or change. The 504 can also be revisited as the situation changes.
Here are my tips for preparing for a 504 meeting and they are based on our son's symptoms. Each each case will vary:
Another possibility is that at some point, your child may need to take some medications during the school day. Timing of medications and supplements is especially hard if you child is attending school rather than homeschooling. However, school nurses are used to children needing medications and are usually quite accommodating. There are usually forms to be filled out and signed by your doctor so I found it helpful to print several copies and include them with the notebook we take to LLMD appointments. This way we can get them signed before when leave the office. Our school system prefers to have a signed sheet for each medication and each supplement, such as artemisinin or a probiotic so I make multiple copies and have one signed for each drug/supplement that will be taken at school. A separate form is sometimes required for inhalers.
Here are my tips for medication taking at school:
Our son's first follow up appointment with his LLMD nurse practitioner went well. The focus was on how to relieve his 3 biggest symptom complaints, look at his lab report and set the treatment course for the next few months. LLMDs often switch up the treatment plans and increase dosages and / or try new antibiotic or herbal strategies to confuse these stubborn infections, bring added relief and continue killing off the pathogens.
The past few weeks he has been gasping for air, just gulping it in, much of the day and night. His breathing had steadily worsened and become his number one issue. He said it feels like someone is sitting on his chest while he breathes through a straw. After a basketball game, we witnessed an hour long episode which had me quickly googling to see if a trip to the ER was in order (it apparently wasn't as his blood oxygen would show as normal) and what other patients recommend to alleviate the symptoms.
As with all things Lyme related, each person has to find what works for them. We all develop our bag of tricks and a mental list of what to try for each symptom. We tried Benadryl, Burbur herbal tincture, breathing into a paper bag, lemon water and probably a few other things I've now forgotten. Luckily the paper bag helped and he started to carry one around in his backpack to school.
So after discussing his breathing, his specialist, in consult with the clinic head, decided to have him try an albuterol inhaler which is working to his great relief. He said he feels that his glass is 80% full rather than 50%. Evidently it is an autonomic side effect of his co-infection(s) and the albuterol sends a message to his system to calm down. Maybe now he'll get better sleep and be able to wake up in the morning. Restless sleep because of the fevers cycling overnight and the breathing problems mean he's missed first period almost every day. We brought in a space heater and now he has the inhaler so maybe we'll see an improvement. We are just glad he's able to attend most of school!
Speaking of co-infections, his labs came back with a high mycoplasma count so there is yet another co-infection to treat. He is starting a heavier treatment for babesia, continuing on some of the same antibiotics and starting to take one daily for the mycoplasma rather than pulsing it. The next few months should be interesting and telling - improvement or herxing or both? He tends to feel worst on his week off of antibiotics although now he won't be completely off them, just mostly on his off weeks.
There's so much say and never enough time to get it all down, especially when dealing with the whimsy of Lyme and all its co-infections from minute to minute, hour to hour, and if we are oh so lucky, week to week. Any parent of a Lyme kid or kids knows exactly what I mean. One day I hope we will all be able to post it's now month to month or better yet years to years or best yet - never again. But of course, we are now all paranoid about that possible future tick bite that causes the merry-go-round to start back up with re-infection or re-activation.
I started this website because when I began my family's research into what I thought at the time was just late stage Lyme in early November 2015, and I quickly realized what a morass we'd waded into. Quickly it became apparent that this was not going to be one or two months of straight doxycycline and that our son did not just have Lyme but other co-infections too from his newly emerging symptoms, particularly during that harsh first month on doxy. After spending a month of my free time researching as many aspects of Lyme as I could and then all these other infections and how they can be treated, I realized I never really saw a site that was geared just toward parents with links to answers of some of the key questions I had and imagined all parents new to this would have.
I also discovered that Lyme is highly politicized which I knew almost right away from online discussions about how to find these elusive LLMDs whose names were not to be posted publicly as well as the lack of insurance coverage for treatment lasting beyond 1-2 months. It was incredibly eye opening and maddening to see how such ill patients and their LLMD doctors are being treated. At the same time, an urge to bury my head in the sand in denial of what lay ahead competed with an obsessive need to figure out which of the many treatment paths we should direct our son to first, seeing as he hopefully has many, many years of life ahead of him.
I quickly realized that most parents of kids with Lyme barely had time to post online because their time was completely consumed by dealing with their immediate situation and when they did it was to post their family story. In fact, because of the complexity of Lyme, reading these online stories was the best way to learn and confirm what our son's positive Lyme test really meant and how little pediatricians or mainstream doctors following the CDC guidelines know. A whole world of co-infections, never once mentioned by our pediatrician, opened up when started googling terms like "drenching night sweats" which it turns out are usually more related to mycoplasma and babesia co-infections rather than Lyme disease. It turns out most Lyme patients actually have multiple infections to treat. That is a hard concept to wrap one's head around - multiple infections! Most people who are ill are dealing with 1 condition or infection - we Lyme parents are dealing with multiple infections which require so multiple treatments for our kids, who are the real sufferers here. Our son looks perfectly fine on the outside - healthy when he's out and about and not sofa bound with black circles under his eyes and all pale and exhausted, but he's a hot mess on the inside ALL THE TIME- an extremely hot mess that no one outside his immediate family can see. Which leads to schooling and how and what to let them know and how to advocate for him since he may seem fine to his teachers who don't know he collapses after school for the rest of the day. Wow, the topics for this blog are never-ending.
Now that we are a few months into the journey, I hope I will continue to find some free time here and there to post about topics of interest or issues we as parents of Lyme kids are facing. I would also like to give a shout out to all the families with multiple Lyme patients, often including the parents who struggle with their own infections while trying to heal their children at the same time.
Working wife and mom to two, including a teen son who was diagnosed with Lyme and other co-infections from an unseen tick bite with no bulls-eye.
Touched by Lyme-Leland
Lyme Disease Challenge Blog
Tired of Lyme
Lyme MD-Dr. Jaller
All Things Lyme-Cameron Blog
Better Health Guy
Abounding in Hope blog-Christian family of 6 w/Lyme
Lyme-Debug Your Health
Realm of Caring