2 PANS kids fighting lyme and coinfections, our journey to healing

Lyme Laser – Day 86

 Lyme Laser Treatment – Day 86

Maintaining at home

Ideally, we would have only just been returning home from NE. This is a 12-week program but as previously mentioned, we were forced to return home a full 1.5 weeks earlier than we should have. Initially, we figured missing those couple of weeks wasn’t a big deal but it has definitely interrupted the flow of diet and supplement schedules. So yes, now I am wishing we stayed for the duration but as that wasn’t possible, here we are.

A few things have happened since we got home, one kiddo is still battling chronic nausea that began around week 8 while in NE, the other still has an infection on the forehead that was there when we arrived. Both kids have returned to school and that’s where we knew we would either confirm true progress or we would crash and burn. So for ease, I will break this down into two parts: Physical and then social – because realistically we struggle with both but they are separate challenges for us.

Physically both are doing pretty great (not perfect, but pretty great). Joint pain is mostly gone, for sure neither kid has woken up with “growing pains” since we returned, no more random weird muscle pain in their upper arms and no more strange shooting pains up their legs or in their toes, and of course, the foot pain I have mentioned before – still has not returned.

Headaches: These really only affected one kid but they too seemingly are gone. We are still struggling with braces (orthodontics) pain in teeth and gums but the TMJ-type pain along with the headaches thankfully no longer seems to be an issue.

Nausea: As I mentioned, one is still struggling a lot with nausea first thing in the morning, sometimes it’s really bad but regardless it tends to pass about an hour after the alarm goes off. Truthfully it is a little disturbing and we have been addressing it with our PCP since returning home (adding in small carbohydrate bursts, little piece of fruit, no water on an empty stomach, adjusting supplement schedules, small snacks before bed, different probiotics, activated charcoal, famotidine, etc) but it remains the same and I am now leery that it has something to do with the braces situation. Have to research that some more.

Stamina: This is an ongoing issue, PACER testing at school keeps triggering asthma attacks. However, the change here is that there is a desire to be fitter, which is a massive change in attitude. Realistically it will take time to get into a routine that involves physical exercise over computer gaming but we have the desire, so that’s a step in the right direction. We did order an oscillator so we can add that to our routine at home.

Skin eruptions: Both have ongoing weird skin issues. One has an almost fungal looking patch on the head, which is being addressed by a dermatologist and the other has dark patches on the forearm that honestly I just thought was dirt when it showed up initially. The patches are not raised or painful but the skin has a dirty gray discoloration to it. It is more visible later in the day and encompasses a large-ish part of the forearm, we had seen something similar early on in treatment on the neck area but that section is completely gone now. I am just assuming that this is due to some weird detox reaction.

Bartonella Rash: Seems to have stayed status quo now for the duration, it is definitely less than when we started but at some point stopped fading and is still visible especially for one kiddo.

Social: School is going superbly well. Both were happy to get back to their friends. Luckily the last two years have been favorable for that. Friends were scarce in the beginning, especially for B because the behavior was so erratic and extreme, but last year that began to turn around. They both now have a couple of really good friends and having a group to hang with at school, always helps the day go better. They both also report that their memory is improving which makes classroom work much easier. Even as late as May this year, B could only follow the first one or two sentences his teacher would say, after that his auditory processing became an issue in addition to the memory challenges and he was lost pretty fast in every class he went into. Both seem to be having an easier time understanding what is being said by the teacher without having to follow up or get extra notes afterward, this is an exciting piece of our puzzle. Processing instructions given verbally for assignments and/or tasks have been a significant problem in the past and caused many upsetting returns home from school. This seems to be resolving little by little as we continue on. I am also ecstatic to report that behavior in school has been great and we are managing to get to school on time which is huge. We had many, many tardies last year and one of our big goals this year was just to get to school on time. Now that sleep is becoming a regular thing, getting up on time is of course much easier and thinking about it logically, this probably helps the memory challenges just as much as working to reduce inflammation and killing Lyme has done. Chicken or the egg…

Homework is still not being completed by B (I just keep saying “breathe, lady, breathe – Rome was not built in a day…”) this is a big struggle because mentioning anything remotely homework related can cause a meltdown of epic proportions. This is where we see the most sparks of prior behaviors. Conversely, A has consistently been an attentive student even in the worst of times, A would cry and struggle and try super hard to keep up even during our homeschool periods. Homework has always been important and completed on time so again status quo reported here, nothing has changed for either of them in this regard.

Diet – Both are now allowed a wide variety of fruits and veggies and even 1 or 2 carbon sugars (honey, maple syrup). Both are taking lunch every day and B is pretty rigid about sticking to the diet, he apparently likes feeling so much better although the “anorexia” part of his OCD has always been a little discouraging. Anyway, he really is eating, eating well and eating in front of us so we know it is not an issue, we tell ourselves his pride in how his body has changed is kinda normal but still, this is a little anxiety driving for us. We have struggled with body image, choking feelings and food refusal several times for both of them and we don’t want that to become a recurring issue. However, they have finally started to grasp the “calorie matching” principle we were told to stick to and so we are just going to proceed with caution on this part of the program. Truthfully, A is struggling a little harder in this area. The desire to eat pancakes instead of protein in the morning is overwhelming and probably relatable to the nausea feeling. We did find a respectable almond flour pancake mix which is also Paleo, no sugar or soy and relatively high in protein. That seems to be a decent starter for the day and is working out well so far. We also found KNOW Foods, which is a huge bonus for the times when I am just too exhausted to cook and be creative or they are craving something cakey.

When we started on this journey a thousand years ago, we didn’t initially know when or how we would get our child (and later our children) back, we didn’t even know what was wrong or where to focus, but we knew we had to bring our kiddo(s) back someway, somehow. When the other one got sick, the panic became even more real. How does one envision supporting two adult children (who are struggling to function) long term, especially at our ages (less than 10 years to retirement) – it becomes very scary to think more than a few days ahead believe me and our conversations became more frantic as the years went by without real healing or relief. Yesterday, was our quarterly psychiatry follow-up appointment. This physician has been on the journey with us for over 4 years now. When we first started meeting with him, we all agreed, B struggled with memory, self-esteem, depression, struggled to stay on topic or focus on general conversations. Most conversations would jump randomly from topic to topic in no particular order. Everyone we had sought out told us B was very complicated and/or complex and many didn’t even know where to begin to try to help us resolve these challenges. Our psychiatrist has been an active participant of our long term support system, despite the fact that we either failed (and sometimes refused) many pharmaceutical or natural supplements, he has never given up making suggestions, talking us through and brainstorming different options. Yesterday, he was so happy to report to me at the end of the session that B’s mood is reportedly “great.” Yes, the kiddo who was been depressed for over 5 years is now reporting feeling “happy” and “ok about stuff.” He is coping well and actually using the strategies learned from years and years of CBT with both the psychiatrist and therapist. These people have been instrumental in helping him reframe the negative thoughts he has always had. However, prior to treating Lyme, rational thought processes or calming techniques were just not accessible to a child, in that moment, who had a brain on the boil.

So on that note, technically we are done, although of course we really aren’t, we are just done the core part of the program.

We will now stay on maintenance for however long it takes to get to 100%. As of today, nothing much changes until next week, then we take a few days break from one of our key supplements – not gonna lie, little terrified about that one but Dr. Wine has assured us it is a very valid next step in the program. So until the next update, wish us continued success and we will see where this takes us… If you are interested in learning from the clinic, contact them at Lyme Laser Centers of New England. However, I will say this, after many years of jumping down one rabbit hole to another (thanks mainly to information like this found on the internet at 2 am), I would caution you to do your own due diligence. Are we 100% well? No. We are only probably around 70-80% better than we were 6 months ago. Both kids still struggle emotionally, both still meltdown and rage randomly but certainly not the chaos it was before. Was this magic? No. There is no magic pill, not one that I have discovered anyway. Was this hard to pull off? Yes. We had to live away from home for nearly 3 months and commit to a program we had no idea would work. Is the diet part tough to maintain? Yes but as time goes on it becomes easier and easier. Does diet even help Lyme? I don’t know, I am not a doctor, it certainly helps us. Gut brain connections are being studied more and more, and so we felt it was an important part of any program, other people don’t. You have to choose. This has helped us get to probably about 80% healthy, this has helped us reduce rages (not eliminate, just reduce) and improve memory, this has helped them both feel mentally and physically better but conversely, there are a thousand different other things we tried that were amazing for others but didn’t help us at all, or it only helped a bit, or the gains didn’t stick, or the cost was prohibitive. So again I would caution you to do your own due diligence. I try really hard to not get caught up in the moment and I try to be realistic about where we are. I would never assume this is it for us, this is all we need because the reality is so many times recovery has been tenuous and treatments that have started successfully, ended up fizzling out. I would never suggest anyone do what we did because again, we are not where we need to be yet and even if we were, this may not be the answer for you anyway. We still also take additional supplements to those that were suggested a LLCNE. You have to read as much as you can (PubMed is a wealth of information), you have to talk to people, and only you can decide what’s next for you. But I can say, this is what’s working for us, right now, today and if I had to do it over again, I would. In fact, I am plotting and scheming how I can get myself through the program because the relief they got, I want for me too. 😀

Happy labor day everyone.

You can reach me at dancingbonfires@gmail.com if you have specific questions otherwise, until next week.

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