I believe it is and I'm here to tell you about it.
I've been hesitant to write this post because of all the unpredictability Lyme and related co-infections bring into our children's and our lives but after today's clean blood report and with the holidays approaching, I've decided to share some great news. Like all things Lyme, time will be the ultimate judge but for now we're celebrating! I'll try to keep the news brief so below is a very brief synopsis of the latest part of the journey.
It was 2 years ago and just a month after his Lyme diagnosis that we decided to host Christmas at our house for family in the area because we weren't sure if our son would be able to get out of bed that day and if not, he would surely enjoy his cousins being nearby. This year we will host again and fully expect him to participate thanks to progress made since July 2017.
Last year, our son continued to miss school - 1 day per week or 20% of the year. He often missed the same day weekly which happened to be the day after restarting medication most weeks. Keeping up with school work was a struggle despite his 504 plan and the teachers who thankfully adhered to it. His LLNP believed he was reinfected with mycoplasma last winter after his numbers finally started dropping and started to climb again into very positive territory. Thus his breathing issues continued and he used an inhaler until just recently when he told me he needed it much less all the sudden. Today his blood work report came back clear for the first time since treatment began.
By last summer, eager to earn some money, he found a great job working part-time outside in the sun at a marina. It was the perfect mix of sun, work and rest between heavy lifting of boats and he wasn't sick at all with the exception of 1 day of rest needed after his first post-diagnosis airplane flight (no herxing side effects) and a week of volunteering at high altitude. This was the first sign things might be improving since he had been sick through June, the very end of school.
He also ended up switching schools at the end of the summer. In a more positive environment and with a personal incentive to not miss a day of school, he took it upon himself to get to bed early every night. I'm thrilled to report he has not had a sick day yet this school year - the first time in 3 years. He also made it past his tick bite day without falling super ill - another first.
He is to continue on a more robust mycoplasma treatment for a few more months and then if everything is still good, he will move to maintenance which is 1 week of treatment after 3 weeks off. This continues for at least a year and then he will hopefully be done with treatment. Because he's a teen, I remind him that for the time being he will need to really stay in touch with his need for rest and that as he moves toward adulthood it will be his responsibility to recognize if symptoms are creeping back and get in touch with his LLNP immediately to squash it back down. I hope he will be willing to try some herbal maintenance and continue his supplements once he's off the meds but he understandably has serious pill fatigue and is a young adult male.
So, some of you might be wondering if there is anything that we think might have contributed to his progress beginning last summer after school was out. Obviously his treatment continued to decrease the pathogen load but I also honestly think that being in direct sunlight, shirtless and (naughtily) not using enough sunscreen as well as working barefoot really helped as did the change in schools. These intangibles seemed to push him in the right direction.
Other than that, he started taking CBD hemp oil daily under the tongue - 3 drops of a concentrated strain in July, diligently followed the LLNP's orders and has also taken probiotics and a few other supplements (currently CBD hemp oil, magnesium, multivitamin, vit D in winter, methyl B12 (under tongue and injections when he felt he needed) without fail. The CBD hemp oil could be playing a role in the absence of his chronic fatigue and better state of mind. I also cannot overstate how much he enjoys his new school combined with being able to play his sport full-time again and how that improved mental outlook has helped his overall health and mood.
While most all of his symptoms are gone, we did have one stumbling block this fall which may or may not be related to Lyme. Our feeling is that while the underlying cause was there, but manageable before Lyme, it was exacerbated by the tick infections and now needs attention for school success to ensue after these 3 years of sub-par participation.
After the school switch, he came to us asking to be checked for ADHD as he couldn't focus or remember what he'd just read and so on. He researched it and gave us his reasons for being tested which included impulsivity (which had peaked just before diagnosis). Last year I wondered myself how prepared he would be for college given 3 years of brain fog, missed school and so on as I felt I could see and hear a difference in him despite the fact that he still functioned at a pretty high level on well days.
His psycho-educational testing results showed pretty strongly ADHD with low working memory and slow processing speeds, which Lyme and tick co-infections also cause. As the psychologist said, he probably always had ADHD given our descriptions of life prior to Lyme back to preschool days, but that Lyme was dragging down everything by some unknown level. This does feel like what we've noticed but of course it's not quantifiable. I poked around online and read many adults with Lyme feel like that part of the disease never leaves, even after getting back to normal (which seems to be less than 100% for most) so I'm not sure we'll ever really be able to tease out the full or lasting impacts of these tick infections.
So, that in a nutshell, is the story of the last few months in an effort to offer hope to those of you still in the thick of it with your kids. It is a long road, full of potholes, threatened by storms and sometimes long, very painful, exhausting and even dangerous detours, but there can be a joyous reunion with better health at the end of it. So keep at it, one step and one day at a time!
The fantastic producers of "Under Our Skin" and "Under Our Skin 2: Emergence" are requesting video stories from the trenches of Lyme. Details are here: underourskin.com/look-of-lyme/#look-of-lyme1
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.
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.
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