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:
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