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With the New Year here and 1 year of treatment completed, I thought it would be a great time to offer some hope to those of you early in this journey.
I hesitate to say hope though because unfortunately there are some patients who face a more difficult and lengthy path to healing and it's pretty much impossible to know early on if your child will have a shorter, more direct path to healing perhaps hiking up and down some challenging hills or a meandering and long one that involves climbing huge mountain peaks along the way. (Remember to look into mold, heavy metals, FL-1953 (Protomyxzoa Rheumatica) and MTHFR genetic mutations if you hit a huge road block.) Then there is always the looming possibility that the journey begins anew after recovery with a relapse or another infected tick bite.
So it's officially been one year that our son has been in long term treatment with a Lyme literate medical practice for Lyme disease, mycoplasma, bartonella and babesia. From what I've learned this year, there could be even more tick diseases he has but hopefully they are being destroyed by some of his various treatments for the 4 we know about.
Has he made progress? I can say so with a resounding YES! Have there been challenges and ongoing issues? Yes to that too. The first 6 months were so difficult with multiple symptoms and many, many days of complete and utter exhaustion and brain fog. But slowly and gradually, by unpeeling the many layers and chipping away at the hardened and entrenched infections along with diligent detoxing and probiotics, healing is occurring. New issues still arise, often centered around whatever infections are being treated at a particular time. However, they seem to be less stark than earlier this year. Gradual lessening of symptoms abounds even while some new ones have arisen.
If you were to ask him, he now says he feels he is back at 80-85% most days but still at 20% on his chronic fatigue days. When not in school and allowed to rest as much as he wants - think summer and holidays, those tired days disappear but with school and his will to push himself on well days, he is still missing about 20% of his freshman year. This is a big improvement over last year though so we'll take it. Plus he recently began twice weekly B12 injections which bring him to 100% for 2 days following the injection. We will be timing them to try to hopefully help him get to school more regularly. He is thrilled to feel "normal" again for part of the week.
You may be thinking, how did this happen for him- is there some magic trick to it? I can only say I believe it's a combination of a LLMD practice that is renowned for success, our son's genetic makeup, his decision to not let these infections rule his life yet still be able to go with the ebb and flow of how he's feeling, his willingness to swallow handfuls of pills and drink yucky tasting tinctures with daily probiotics, using a trial and error method to incorporating supplements and herbs, and some plain ole good luck and lots of faith and prayer along the way.
I really hope that your family will experience healing in 2017!
When you look back and realize small signs of Lyme that were there all along - eye issues & careful listening as parents
As with many Lyme families whose kids are able to attend school, even if part-time, holiday breaks are often fun mixed with various medical appointments. I try to schedule them over breaks if possible because so much school is missed and so much school work has to be made up.
One particular appointment this break got me to thinking about how there was a sign for many years before our son was diagnosed that indicated something was wrong and it happened before many of the other more obvious signs appeared. Off and on for years he had been asking for glasses and complaining that something was wrong with his eyes.
Around fifth grade at his request, I took him to one optometrist who pulled me aside and said he was faking it after the exam - his eyesight was just fine. Given that his friend had just got his first pair of glasses, I chalked it up to a desire to follow his friend's footsteps.
Complaints continued off and on yet further optometry appointments revealed his eye sight was fine. At one point at his request, we did buy some reading glasses for him which he said helped some. Finally last spring he was unable to read text at all and his eyes hurt terribly. Never one to complain about physical pain, it was unbearable to him by the time he spoke up.
We literally left his LLMD appointment late one day and he demanded that we drive straight to the optometrist, who finally said that he was now near-sighted - very common for teens his age. He received a prescription which we filled then and there. It was a huge relief to him and he seemed to be able to read again, probably because the frames were drawing his focus in.
Then this fall, he began complaining again about reading again and had already long ago changed his phone text to a larger size. It was after I handed him something to read because I didn't have my reading glasses and he couldn't that I realized it was time for another eye exam.
Between the brain fog and the eyes, he had long given up reading anything of length this past year. We are slowly trying to work on that but a full day of school and whatever reading is required there is truly all that can be expected - and that - changing expectations - is fodder for another blog post!
By this time I had read online that a baseline exam with an opthalmologist to see if there was any neurological involvement due to Lyme and tick diseases was a good idea. There were also a few articles appearing on my Lyme news threads about the growing realization that eye involvement was an issue for many Lyme patients.
Thus, I scheduled an appointment with a Lyme literate pediatric opthalmologist and it was discovered that his distance vision was now much stronger in one eye, so he was prescribed a weaker lens for that. I've never heard of a kid moving down so drastically but with Lyme, anything is possible. He also switched to bifocals which hopefully will aid him in reading since that was actually his biggest frustration and concern.
So, as parents we do need to regularly question our kids in a gentle way about all their body systems. I did this every couple of days early in treatment because there are so many symptoms flaring and coming and going. Now a year in, we discuss it once a week at most, but as his eye situation showed me, even with recalcitrant teens, we must encourage them to stop and reflect on how their body is or isn't working properly throughout the healing process.
This is particularly challenging with the youngest patients though and I feel for those with children who aren't able to articulate what is going on. I know our son couldn't in the early years. Also they don't often know what "normal" is since they may not have experienced it. Thus careful and thoughtful questioning and listening as a parent is critical.
When we finally received the Lyme diagnosis late in 2015 and I began researching once it was apparent that 1 month on antibiotics was not going to cut it, all the advice I received online and in phone calls from other Lyme parents was related to finding an LLMD - a Lyme literate medical doctor.
Wrapping my head around that was hard enough - it quickly became evident we would be heading outside of the medical mainstream. The learning curve and trust factor was steep and I was overwhelmed with a terribly sick child whose night sweats actually caused our washing machine to break from overuse among other things.
Because we did not, like many Lyme patients, see many specialists prior to the diagnosis - which nevertheless took at least 3 appointments with the pediatric group along with my insistence on bloodwork for 3 illnesses that could be causing the symptoms - I did not realize that finding an LLMD was just the first step to assembling a team of caregivers to help deal with the myriad issues that can crop up during treatment. One year into treatment and we are still building that team! Being proactive and compiling some names before you need them will do a lot to alleviate the stress when a weird and potentially dangerous symptom appears.
Below I list a few of the possible specialists you may want to line up in advance. If you can, start compiling a list early on so that you are ready when you may suddenly need them, particularly the cardiac and mental health professionals because they can be risky areas with a need for sudden and immediate care, and in our personal experience - an eye doctor as well.
Aside from asking your LLMD for referrals, I also recommend joining local online or in-person groups to search and/or request recommendations because you really need to have Lyme literate or open-minded professionals on your team and the best way to find them is from your LLMD and local families who have tread this path before you. See the Support & Advocacy tab on this site for national support groups who also maintain lists.
Here's the list in no particular order and remember all really must have direct experience with Lyme/tick diseases:
First off, I would love to get some feedback on this topic which I'm revisiting earlier than I had expected - have you noticed that your kid(s) with Lyme perk up in the summer, only to slide back into symptoms in the fall-winter-spring? This is the second year we've seen this happen rather dramatically.
As mentioned in my last blog post, our son had an amazing almost symptom-free summer, starting as usual in mid-June, except for one terrible heat-induced breathing and hyperventilation episode and hot flashes and daily fever (down from numerous daily fevers). The best part was he had not one day or night of the chronic exhaustion! He was able to enjoy time with friends, even group sleep-overs - things that happened minimally, if at all, last school year. And he started high school cross country, despite his breathing issues which is pretty awesome.
But then school started and by the second day he spiked an afternoon fever in class and came straight home and didn't move the rest of the night. I admit it was a big blow for me. While I knew based on his history the past few years that relapses had happened in October - around his bite time, I was hopeful we would be past it this year.
The good news is that, after 10 months of treatment, he rebounded more quickly than last year. This week the day after re-starting treatment, he had a sofa day and missed school and a test. Again, he recovered and attended school the next day. Hopefully this trend of 1 day of fatigue and then well again will continue so less school will be missed. Progress, however slow it can seem, is being made with his treatment and that is so gratifying.
Thank God for LLMDs and LLNPs - forever our publicly unsung heroes with their knowledge, tenacity, open mindedness, compassion and willingness to fight for their patients' rights to heal!
I thought I'd write about something that is very common to Lyme families - new symptoms emerging throughout treatment. A month ago, our son started a new protocol which included treatment for bartonella, also known as "cat scratch fever".
While he had some symptoms of it - extreme irritation and cursing a lot which are also hallmarks of teen boy behavior - it was unclear that he was infected. He had no skin marks nor the common complaint of pain on the soles of the feet. The diagnosis had been made clinically, plus it is ranked as the number one tick co-infection and since he had number 2: babesia and number 4: mycoplasma, it would make sense that he could also have number 1: bartonella.
The day before he started his second cycle after a break, our family was watching television and I looked down and saw stretch marks in the center of his back at the midpoint of his spine. While looking at that I also noticed a pretty large patch of very small white spots up along his hairline, like a smattering of white freckles against his tanned skin.
A quick internet search showed numerous photos of bartonella stretch marks in the same exact spot. I'm not sure what the white spots are - a fungus perhaps? The stretch marks were lighter and a very pale pink compared to the more striking internet images. By the next morning they were gone, the white patches were fainter, and he started cycle two. Now on day 5 the stretch marks are back and the spots are now larger raised pink welts and are moving down toward the stretch marks - pretty sure they are both caused by bartonella which has clearly been stirred up with the new treatment.
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.
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