We have so much to be thankful for this year -especially continued good health and a great schooling situation.
Just wanted to drop in and say that our son is still doing great aside from reoccurring mycoplasma pneumonia infections which are pretty much asymptomatic but still being treated by the LLMD/NPs because they say it means his immune system could be a bit stronger still. The Lyme, babesia and bartonella are not evident symptomatically and haven't been for 1.5 years. He is still not quite off antibiotics because of the mycoplasma pneumonia but is now going many weeks without them.
With college ahead, I'd like to use the final year + to establish both healthier eating and an herbal maintenance protocol that would be easy for him to follow if he chooses, but that is hard to do with a stubborn, active teen boy. Treading the line between being alarmist, which he thinks I am, and educating him about what remission means and what could happen if he ignores signs of a return requires waiting for those brief opportunities when a teen is willing to listen and discuss without the shutting down or argumentative moments teens have. Please let me know if you have any suggestions!
As age 18 approaches for him and medically he becomes an adult, it is important that we encourage him to sign paperwork that allows medical professionals to speak with us if the need arises. I've heard some terrifying stories of young adults becoming incapacitated and their families not being notified and/or shut out of medical decisions. I anticipate this may be challenging given his desire for independence.
I hope you and yours have a peaceful Thanksgiving.
With all the research I've done over the past 4 years, I never made time to look into the effects of antibiotics on the gut microbiome but assumed all helped destroy it. We always followed our LLMD's recommendation of having our son take probiotics at least 2 hours away from the antibiotics every day. We also supplemented with kefir and yogurt - I realize many people with Lyme have to cut out dairy but we didn't so were able to supplement with fermented dairy products. Fresh-made slaw, pickles, kimchee and sauerkraut are excellent non-dairy supplements.
Recently I came across a 2015 article in the Atlantic Monthly which discusses various effects and how long it takes to repair the gut after antibiotic use. I was surprised and somewhat reassured to read that certain antibiotics in the tetracycline class (Doxycycline and Minocycline) our son has used do not affect his digestive system. As one would expect, the broad spectrum antibiotics like Cipro do affect the gut in a long-term way. To learn more, check out "Atlantic Monthly: Antibiotics can change the gut microbiome for up to a year".
With all the use of antibiotics in the meat, dairy and poultry industries, one has to imagine it's difficult to repair the gut ever if eating any non-organic products which may also explain the rise in allergies, mental health issues and overall health concerns. This combined with the use of endocrine disrupters like those found in plastics are assaulting all of us.
I've been wanting to write about CBD hemp oil for some time since we've found it to be one of the best additions to our Lyme arsenal even though we added it only recently. CBD oil made from hemp, a relative of marijuana without the psychoactive component called THC which causes the "high" has been a very useful addition to our son's supplements.
He started it about 1 1/2 years into his treatment after I brought it up with his LLNP who told us it was fine to try. After starting it, he has not had another chronic fatigue day nor more knee swelling, both of which were still occurring at the time he started using CBD hemp oil.
CBD hemp oil is currently legal throughout the US while medical marijuana, also quite useful for adult Lyme patients, is only available in certain states - currently over half of US states have legalized it. For some adults with tick infections, the synergistic or "entourage" effect of having a medicinal strain of marijuana with high CBD/low THC (not no THC like the CBD hemp) is key for relief but this is obviously not for use by children or teens.
We found that CBD hemp oil alone provided relief from fatigue, swelling and foul moods in our son. It often works for many other symptoms including seizures/tics, headaches, nerve pain and many more.
How to Use CBD Hemp
Our LLNP recommended the following when trying CBD hemp. She said that their practice found some patients experienced relief and others didn't and we could give it a try.
She recommended using it twice daily for a month before deciding if it was working or not and to play around with the dosing to see if there was a sweet spot. Many Lyme patients say they use a full dropper morning and evening, but we find just 3-5 drops of a concentrated form taken once daily works for him.
While we use it (I use it myself for headaches) under the tongue for quicker absorption, you can chase it down with water or juice too. The brand we use has coconut oil mixed in to help the fat soluble CBD get picked up in the intestine. Some brands taste very strong and grassy. Many kids tolerate an oil that has a chocolate mint flavor and its the one we also prefer. You can also purchase salves with CBD to put directly on sore joints.
What to Consider When Purchasing CBD Hemp Oil
What Convinced Me About CBD Hemp's Benefits
I read various articles including this one from Hemp Oil Facts on Conditions Hemp May Help.
This video series by CNN's Dr. Sanjay Gupta and one about Medical Marijuana had a huge influence but there are others out there:
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.
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.
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