Caring for a Son/Daughter with Lyme

I had recently written a post about what to expect when a loved one has lyme disease, but the relationship between a parent/caretaker with a child or teenager infected with Lyme Disease carries a very unique dynamic that I felt like deserved a more in-depth analysis. I was never a parent in this situation but I have been the young adult that needed to rely on his parents for the most basic of things while I was ill. It was a difficult time, and though my parents certainly tried their best, it wasn't easy as there's no manual or guidebook out there on how to care for one with this insidious illness. I can do my best from relaying my own experiences and what I've witnessed with other families on how to care for your child through a very difficult time for your entire family.

Before we delve into caring for your loved one, we need to establish the harsh reality behind this illness. If you cant accept this, than unfortunately there's no point in you reading anything else beyond this. Your child is likely very sick and you've probably jumped around to a million different doctors in an effort to obtain a diagnosis. As most families who go through this, the possibility that your child isn't even ill and this disease is all in their heads has possibly been offered by at least a few doctors. At one point you may have even acknowledged the very possibility that this really is psychological and not physical. Right now, for the sake of your child's life, you need to accept the fact that conventional medicine has let you down and is wrong. I know that theres a good chance that you may have never been let down by your family physician before, but unfortunately there's a first time for everything. I can go into why the majority of the medical community continues to deny the existence of the later stages of this illness, but its too time consuming and will likely be covered in another post later on. For now, you need to accept that your child is very sick and there likely isn't any help coming from your regular team of doctors. You need to find them a Lyme-Literate Medical Doctor who knows how to treat tick-borne diseases. Do not go to the local naturopath where lyme patients make up two percent of their practice, go to someone who focuses purely on treating Tick-borne illnesses. Also, keep an eye out for quacks, because though most Lyme doctors are well intentioned you will run into ones who are in this purely for themselves. If a doctor is jumping to a Lyme diagnosis with literally zero evidence and trying to sell you tons of supplements that they manufacture themselves in their back office, it may be time to look elsewhere.

One of the hardest parts of dealing with this illness is the isolation that it will bring, and that's devastating for someone still in their adolescence. This should be a time when your child is growing and making friends, discovering who they are, and learning the morals and values that will allow them to become the person you want them to be. This can and will still happen, but it'll be through a different path than most and will require more guidance from you. Most children or teenagers have a number of different outlets that cultivate them and grow them into the person they'll become. Sure, their parents have a part, but their friends in school have a huge impact, as well as the extra-curricular activities they take part and just being out there in the world. The access to all those avenues to grow may be temporarily cut off from your child which will make it harder on them. You will have to take a more active-part in your child's life by not only providing the care they need, but also being there for emotional support and being their major source for socialization. Sometimes with teenagers, its not your responsibility to necessarily be their friend, but while they're sick with Lyme, you'll have to make a greater effort to really connect with them.

That's the tragedy for the younger fighters, it's the time lost. Lyme usually takes months if not years to recover from, and there's really no shortcuts with this illness. It will likely leave your child bedridden at times and unable to go to school. Due to this it can create a trap in which those with the illness are forever stuck in the age that they became sick at, living out a peter-pan type of existence. It is paramount that you never let your loved one become complacent, and that you continually try to push their development forward. I know from my personal experience that I left my parents home at eighteen, and when I left I was very immature and constantly found myself getting into trouble. When I returned home, sick with Lyme at twenty-one, they still treated me like the child who left their home a few years earlier, though I had grown exponentially since that time, traveling, and doing well in my studies and work. Over the next couple years while I recovered from Lyme and remained in their house, they continued to still treat me like the young kid that never grew up and I started to find myself regressing back to that person. It wasn't intentional on their part at all, but it definitely did create a divide in the relationship. Though your child may have gotten sick at twelve or thirteen, if they're sixteen now, its of extreme importance that you hold them up to the standard and accountability of a normal sixteen year old. It's difficult, and it may take time to strike that balance of still caring for them while pushing them a bit, but its very important that you continue to at least make that effort.

There will also be times where your child will become completely overwhelmed with their situation. Its a hard concept to grasp that the world around them moves along as if everything is alright, while theirs is at a complete stand-still. No one could ever expect to deal with an illness of this magnitude, and certainly no one at such a young age. More than anything, they will need someone who is there to just listen to them sometimes. They won't always need a pick-me up or a lecture about toughing it out. Sometimes they just will want you to lend your ear so they can vent. It'll be the perfect time to pull back and listen to your child. That's also what will make this experience much easier, if the two of you remain transparent with one another and continually listen to what the other has to say. Lyme Disease is something that affects everyone differently so the only way you can ever fully understand what your child is going through is to take in everything they tell you. Also, whatever you do, try not to complain about how hard this is on the family in front of them. It may sound like common sense, but it can be easy to become overwhelmed and take your frustrations out in an unproductive manner. Don't ever lament to them the financial struggles that have been incurred due to their illness, they feel bad enough about becoming a burden on those around them and they certainly don't need to continually hear an exact number on the amount of money you've spent on their treatments. If you're trying to connect with your loved one, this certainly isn't the way to go about it.

One last thing I want to throw in there is that you should watch after your entire family. I suspect that a good amount of you have other children who are in good health. Its important that all your energy isn't poured into your child with Lyme. They will certainly need more of it than usual, but you cant forget about your other loved ones. I feel its very productive from the beginning to still take an interests in your other childrens' life but to also be upfront with them that the reality is you have to pay greater attention to their brother or sister but you will still remain an active-part in their life and love them. If you focus all your attention on your child who's ill, it may create tension between the siblings and everyone will be worse off. Once again, this illness is a balancing act, and it'll take time but eventually you'll be able to figure out the appropriate balance within your family.

There you have it, its a hard road ahead, but one that if handled well, will leave you with a long-lasting strengthened relationship with your child. I've seen parent-child relationships come out so much better at the end of this difficult time. It's important to know that though your child may behave differently now, whether its brain fog, mood changes, or the terrible fatigue that consumes those with Lyme, they're still that same child you always knew and what they're going through isn't their fault at all. Its a tough illness, and a hard interruption in their childhood years, but they trade off for some of those adolescence experiences they miss for a hardened toughness that will help them on later in life. It's up to your loved one to decide whether that's a fair trade off, but a stronger relationship between the two of you will certainly be a positive they likely wouldn't trade anything for.

Co- Infections: The Possible Disease Behind the Mask of Lyme

When people often ask what I'm sick with, I'm very quick to rebut with  Lyme Disease. But in my head, I know I'm lying. At one time I truly did believe that Lyme Disease was the invader that was cruelly robbing me of everything that made me who I am, but now I know better. Lyme was merely a mask, a facade, it was a name that was hiding the real monster beneath everything, running rampant throughout my body. I could treat Lyme Disease all I want, but it wasn't until I dug in and went after the real enemies that my improvement occurred. I may say that I'm sick with Lyme Disease, but the truth is I'm sick with Babesiosis and Bartonellosis and there were times I felt like these two would kill me.

I'm not a doctor, so if you're looking for a scholarly argument on the effects from Co-Infections you should look elsewhere. All I can really do at this point is relate my experiences with my illness to hopefully help those who are reading this. If I would've had this information earlier it would've likely expedited my recovery process a lot. That's what this is about, sharing our stories to give others a better starting point, a leg up so to speak. To be fair, there's a reasonable chance that it really is Lyme Disease causing your symptoms, but you must also at least look into the possibilities of co-infections. I'm not an LLMD, but thats what's been relayed to me from more than a couple Lyme Literate Doctors. 

A huge issue within the Lyme Community is the constant battle with the IDSA. Among many of their arguments is one that people thirty years ago recovered from Lyme remarkably well with just a few weeks from antibiotics, so why would it be different now. And they're right, sort of. Lyme patients did recover at a more successful rate when this illness was first discovered, so it shouldn't be different now, but unfortunately it is. That's because we're not just dealing with a single entity now with this illness, its a multi-faceted monster. There's no official statistics, but it is believed the rise in co-infections since the discovery of borrelia is exponential. As Richard Horowitz has stated, with this illness you now have multiple nails lodged in your foot. If you treat solely Lyme, you're only removing one of those nails, is the patient really going to be in that much better shape with all the other nails still stuck in their foot? If you haven't picked up on it, the co-infections are those other nails.

There were two reasons why I was able to improve and that's treating biofilm and treating my co-infections. The biofilm will be covered in another piece later on, but for now we'll focus on my history with these bad boys. When I was first diagnosed by a naturopath she mentioned that with my symptoms I probably had Babesia and Bartonella, but I ignored it. My test results were positive for Lyme, I didn't care about these supposed other infections. I remember hearing everyone say they had these, so I blew it off entirely. She tried treating me for them, while still mainly focusing on Lyme for three months but due to my stomach not absorbing medications at any point, nothing happened. 

My next treatment would be Envita, which was comprised of mostly IV medications. The doctor there didn't even test for co-infections nor seemed to really care. He kept saying that the treatments covered all infections so I shouldn't worry much. I did get better originally, but the symptoms that really plagued me didn't seem to necessarily fully go away. I crashed not that long after, and looking back I shouldn't be surprised as the real issues were never addressed.

My next treatments would take me to doctors on the east coast who had a much better grasp on my case. The first thing one of them did was test me for co-infections right off the bat. Though the tests are notoriously known for being extremely inaccurate I was lucky in an odd sense and tested CDC positive for babesiosis. I told him that I thought I had Lyme, and he said I probably did but what was causing my symptoms was the babesia. It's rather embarrassing to admit but one of my worse symptoms was the drenching sweats that never seemed to dissipate over the course of my illness. Every day, even if I remained inactive my body was sweating and I couldn't understand why. He relayed this was tied into the babesiosis, a malarial-like organism. I tried mepron for awhile but didn't tolerate it very well so I was moved over to a mixture of Coartem, Artemisinin, Malarone and Bacterium all being switched in and out of one another week by week. These were all malaria drugs and they seemed to actually be working. They provoked huge herxheimer reactions but I started to see my energy slowly come back and the sweating that had plagued me for years finally started to disappear. 

I was elated, I felt like I was finally on the track to wellness, but I wasn't prepared for what was next. Throughout those three years of being bed-ridden and sick, outside of my fatigue, nothing inflicted more suffering than the abdominal pain I went through on a daily basis. But after two years it seemed like I took care of it by having my gall bladder removed. After treating the babesia the abdominal pain suddenly returned with a vengeance. It was terrible, but also distinctly different than the original pain. It felt like my stomach was in tons of knots and just not functioning properly. My weight started to plummet again and I was never hungry. "Oh, not again!" was the thought that routinely came back into my mind. I was distraught at the thought I may be crashing again. Luckily, I was with a doctor that actually knew how to treat the illness properly.

I met with him and he kept trying to figure out how these symptoms came about. He asked me if I had any stretch marks, and I responded yes but I couldn't see how it was related. I had worked out while I was in college and had put on forty pounds of muscle in the span of two years so stretch marks are inevitable under those circumstances. However, he insisted upon seeing them. I lifted up my shirt and he was relatively shocked at what he saw, but now at ease with where to go next. He relayed that these were in fact Bartonella marks as they were extremely deep and purple, a color normal stretch marks would never be. He told me abdominal pain was very common with Bartonella and he was almost certain it was the cause behind my sudden abdominal discomfort. He prescribed me on rifampin and within two weeks my stomach pain disappeared. The infection will still return once I go off antibiotics but it should eventually be taken care of, and we at least know what exact direction to go in with my treatment now.

My advice to other patients would be to make sure your LLMD is trying to figure out if you have co-infections before anything else. The tests are very unreliable, so the diagnosis will likely have to be made by your symptoms and reactions to meds. If you have a herx to medications that are specifically for a certain co-infection than you are likely dealing with that exact co-infection within your body and it must be addressed. This illness is like an onion, and the co-infections are the outer layer that must be peeled back or you will never get better. I hope this helps, and is a piece of insight to help speed your recovery!