What I’ve learned about Lyme Disease

I am not an MD, just a Mom with a kiddo dealing with Lyme. I wanted to share what I’ve learned in the past few years, with the hope it may help 1 person just beginning on this journey. This is not an end all & be all by any means, it is simply a start.

Unfortunately, I know way more about this ailment than I would like to. I live in SW Wisco, and honestly can say there are very few people I know locally whose lives have not been touched by Lyme one way or another. My Son (7 years old at the time I’m writing this) was diagnosed 2 years ago. My niece (5) has tested positive. So has my Sister. So have many, many friends & acquaintances. My Mom has been a nurse in our local Complimentary Medicine clinic, under the local Lyme-literate MD, for ~20 years. I do not think calling this an epidemic is an over-statement.

Orion’s story:

The bite: They say the tick needs to be embedded 24+ hrs. I do not think this is true based on our experience. My Son was bitten in the Fall of ’16. He says: Mom, I think there’s a tick crawling behind my ear. I look, don’t see anything. A minute later: Mom, I think I just got bit (I’ve been bitten by ticks several times & you usually do feel it). I look where I had just peeked a bit ago & sure enough, he just got bit. I pulled it out immediately; it was in him a matter of seconds. Then I watched as his body flushed cherry red from the bite spot behind his ear, down that side of his face, and down his torso all the way to his waist, it was crazy & totally freaked me out. I whisked him away into a cool bath & it calmed down pretty quickly. But it was definitely drastic, and definitely instant. There was never the iconic “bullseye” rash, and what I’ve learned is many who’ve been diagnosed never see that rash, many never see the bite at all…Standard protocol here is 3w of antibiotics for any new deer tick bite. As much as I loathe antibiotics, I also know how serious Lyme is, so we followed the protocol & didn’t think a whole lot of it for the next year. The following Summer he had a few instances of random fever, headaches, nothing frequent, nothing super worrisome.

The next Fall, 1 year after that bite, he started pre-K 2 days/week. He loved it at 1st, which surprised me being he had never been to daycare a day in his life (he was 5), never been to a “babysitter” other than my Mom or our/his best friend’s house. After about the 2nd week (of just 2 days/week), something changed. He would go on a Tue morning, totally healthy & happy, and by 1pm the school was calling to tell me he was in the nurse’s office, he had puked. 1st time wasn’t a big deal. 2nd time in the same week (again, 2 days/week) and I started to worry. Then it just kept happening. By mid-day he was miserable. Yes, he missed me, but he was getting physically ill. It was the end of Summer & still quite hot. The days he did make it through the whole day, when I’d go to pick him up, he would be super beet red in the face, just dripping with sweat (they had a last recess right at the end of the day). They told me he had started just sitting on a bench during recess, totally not something I could imagine him doing. I now know that he, and many Lyme patients, have a very hard time with thermal regulation. The principal was so wonderful & kind, and suggested we try 1/2 days & see how that went. We tried the 1st 1/2 day, and when I got there to pick him up at noon, I saw him round a corner coming in from outside, and he was crying. I scooped him up in a big hug, we cleared out his locker, and I withdrew him right then & there. At the time I attributed all this to our full-time family, attachment parenting lifestyle, but looking back I really think his Lyme symptoms played as much or more of a role. He still hadn’t been diagnosed yet though…. The headaches just kept coming, even after I pulled him out of school. I think school was the stressor that kinda’ ‘broke the camel’s back and made these symptoms present themselves consistently. In the couple weeks after pulling him out, he just had way too many headaches. I’ve never had a migraine thank goodness, but that’s what he seemed to experience. He’d gloss over, I could see it in his eyes. The only thing he’d want to do was lay on the couch & snuggle me. He’d pass out for an hour or so, wake up & vomit, sleep a little more, then usually feel much better. I knew this was not normal & his body was telling us something. I remembered that tick bite a year ago & just had a hunch…..

The tests: The test protocol is ridiculous, in my opinion. Here’s what happened in our case: He had a blood draw, his primary doc followed CDC protocol which is due test A, only if that comes back positive do they do test B, the Western Blot. The Western Blot has numerous bands & which ones come back positive can show if it’s chronic, acute, etc. Here’s a brief explanation from the CDC: https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/westernblot/index.html

If test A comes back negative, they say: good to go, no Lyme here. Well, test A is notoriously false negative. And since my Mom knows this, when the clinic called to say test A was negative, she urged me to call them & request they do the western blot. Guess what? That came back positive on 3 bands: chronic, acute, Lyme specific (shows that his body was making antibodies in response to Lyme). Had it not been for my Mom’s knowledge & urging, that 2nd test never would’ve been done, and we may still be wondering why the headaches out of nowhere. Guess what else is entirely messed up about the testing? According to the CDC, if 5+ bands are not positive, they deem that a negative result. So even though my Son has THE band showing he’s making Lyme antibodies, they would say he does not have Lyme.

So back to that bite, can I say for certain that couple of second bite is when he contracted it? No, I can’t. It’s possible he was bit another time and no one saw it. MANY people who have Lyme did not see/feel a bite, they never saw the tick. Also, there are more & more theories that mosquitoes & other carriers might be spreading it as well. But my Mama gut says the 1 known bite we witnessed was when he got it, regardless of the “it has to be in you 24 hr” myth.

2nd bite:

2 years after the initial test, I wanted to have a re-test to get an idea of where we were at. I had treated with natural remedies on/off, and was more curious that anything. He had long periods of time, months & months, with 0 symptoms, but every now & then an occasional headache & my curiosity urged me to re-test. To complicate matters greatly, he had a deer tick embedded in his head the day before we received those results… That test showed the chronic band to still be positive, although the CDC doesn’t deem it positive unless 5+ bands are positive, and he only had 2. It was encouraging that he was down to 2 bands, from 3, so it gives me hope that our remedies were doing something! But then we were left with the dilemma of treating a brand new bite. Uggggghhhhhh!

 

Treatment: This is the SUPER difficult part. And I’m not an expert, and not here to diagnose or treat. You’re going to have to do a lot of research, as well as trial & error to determine the best treatment for your case. But I will list some of the natural remedies we turned to, that I do feel helped.

On antibiotics: Yes, they absolutely have their place in western medicine. Yes, I’d do pretty much anything to knock Lyme out of his system. But here’s what I’ve learned about Lyme: abx just beat the spirochetes into hiding, they do not kill them. They can treat secondary symptoms and co-infections, but not the Lyme spirochetes themselves. Many docs will prescribe 10 days of abs for a tick bite, many others maintain that needs to be AT LEAST 21 days, if not 6w. As most of you know, long term abx use comes with a whole host of other side effects… We did the standard 3w protocol with the 1st bite, for the 2nd bite we were ready to go the 6w route, to try to really get on top of any possible infection from the new bite, as well as really beat back the old one. By 4w, my Son was just not doing well. He had headaches frequently, and just was not healthy. The tough question was: is this because the abx were working, killing unwanted invaders in his body? Sometimes you feel worse before you feel better… But I just couldn’t do it anymore, we quit at 4w. I know of people who are on consistent, long term antibiotics for Lyme, like pretty much indefinitely, and I just know that is not the path for us.

Steve Buhner Protcol: One of the foremost respected authors on this topic, from a natural-healing perspective, from what I can gather. He has written multiple books on the topic. There are books for dealing with co-infections, the list of available titles goes on & on. So many of us wish for a simple, easy to understand & implement protocol, telling us what to do when. That just does not exist with Lyme… But he should definitely be on your list of authors to read up on, if you’re dealing with this ailment. There are FB groups dedicated to his protocols too. The Knotweed/Catslaw regimen we were doing was based on his recommendations. I don’t remember that he was recommending Stevia at the time, but based on new (to me) research I read up on, I felt it was promising enough to add, with little to no side-effects. Stevia, Japanese Knotweed, Catsclaw are some of the most promising remedies I learned about following the Buhner protocol, and I used them with my Son on & off over the course of a year.

New bite: I was recommended this protocol after his 2nd bite, I quickly ordered Ledum 200C with next day Prime shipping. It is something I will always have on hand going forward, and give as soon as we see a bite: https://joettecalabrese.com/blog/protocol-lyme-disease-using-homeopathy/

 

As always, no matter what the condition or ailment, your best defense is a strong, healthy immune system. Those with already impaired systems suffer much worse from this ailment that those with healthy systems! I’m convinced that my 5 year old, with a still-developing immune system, and the new stressors of going to public school for the 1st few weeks, really saw those Lyme symptoms come out. More-so than if he was older, with less environmental stress. Here’s a post I did featuring my favorite natural remedies for a variety of ailments, but it includes what we used for the stevia, knotweed, cats claw: https://ecofriendlymamausa.com/2017/09/06/my-natural-remedy-collection/

 

 

As I discussed recently with a friend battling Lyme, you really don’t know where to start. And then you do start, and you have to devote months to that treatment. And you may feel worse before better. You really can’t say that X is working. It’s so, so difficult & frustrating to navigate this world. We ALL want to just be able to go see a trusted medical professional, get told: yes, you are positive, this is the plan of attack, come back for a follow-up in a month. That just doesn’t exist with Lyme. There are so few docs that are Lyme Literate, and even among those, treatment varies widely, and results are not consistent from patient to patient.

His future: Lyme is an ailment you treat based on symptoms really. There’s a good chance he may always test positive for it. But as long as he isn’t showing symptoms, we pretty much forget about it. And I’m grateful to say he’s not shown any unexplained, prolonged, out of the ordinary symptoms for quite some time. So, prevention then remains our focus. After his 2nd bite last May, we shaved his head (he was happy to match Daddy’s haircut & had been requesting it already). That makes it soooo much easier to see those tiny critters. My daughter prefers short hair at this time too, and it’s almost whitish blonde, so easy to see movement or anything of color. I picked an INCREDIBLY tiny tick off her forehead, I can’t even believe I saw it. It had not yet bitten her, but was headed for her scalp for sure. We are an incredibly outdoorsy family, surrounded by hundreds of acres of woodlands. As much as I loathe & fear this nasty little critter, I will not let it shape our love of the outdoors. After a hike outside, we do a thorough check, shedding outside clothes at the front door & leaving them out there.

 

 

Conclusion: This is my least favorite topic I’ve ever written about. I feel it is surrounded by doom & gloom. But, I’m forever the optimist. I find hope in the fact that we caught it early in my Son, not after 10 years of unexplained symptoms. He is young, and that helps his odds at fighting this. We know what we are dealing with. I’m so thankful my Mom was able to advise to request the Western Blot test after the 1st, standard test, was negative. Otherwise we, like SO MANY others, may be undergoing every test in the book to try to figure out what was going on, with no answers. While sometimes I wish it were me battling this, not my Son, I remind myself that he’s lucky to have me as a non-affected advocate & researcher. My friend who is in his 50’s complains terribly about the “brain fog” that is associated with Lyme, and I’ve heard that from others too. It’s really hard to research & plot the best course of action when you cannot think clearly. So, I’m able to do that for my Son.

 

Resources:

In this article the CDC admits Lyme has tripled in a little over a decade, as well as the fact that it is present in 49/50 states (previously maintained that it was only E. Coast): https://www.prohealth.com/library/touched-lyme-new-cdc-stance-lyme-disease-80905?fbclid=IwAR1eM68OCSp7G-B0l41J6YEUQo33FfILvA1jxsODLrxVdXaiZIUp4dYP75w

Under Our Skin: http://underourskin.com/?fbclid=IwAR09-jDHHnBvYURb0fJLq6tr9QepfduWGpdvtn6dK0wBmqZH7ewZHHSABYA

Good 14 min talk on the subject: https://www.youtube.com/watch?v=SEQhEtXGHUo&fbclid=IwAR1BawDgNU0MCBamHQors6xgH_QfCDFAn9xJElTnx2LMe4-cHsqd7D6H1v0

 

Stevia: http://www.greenmedinfo.com/blog/stevia-kills-lyme-disease-pathogen-better-antibiotics-preclinical-study?fbclid=IwAR3FUrMuai1z0TrGB8Xlu8T_Whk8JwIHKEm7TLWp7q82pl8972fvSwCHcXk#

 

 

 

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