To recap: I am a 25 year old female. Diagnosed with Lyme disease October 2015, though struggling with it for the past 3 years. Recently my diagnosis has been update to Neuroborreliosis- meaning that the infection is late stage enough that it has gotten to my nervous system. I work with a Lyme specialist in New Hampshire for my treatment.
The first thing that will happen when you’ve found your Lyme literate Doc, is together you will go over your entire medical history. All of the pertinent and not so pertinent information. Again, and again. And one more time for good measure. Copious notes will be made. You’ll talk about your bowel movements, and if you’re like me you’ll spend an inordinate amount of time trying to get them to say ‘poop’-they never will. Major life events will be discussed, that pediatrician you saw that one time when your parents were traveling through that one town ages ago when you sneezed funny will be brought up. Everything. Will be. Discussed. Which is awesome, because if they’re good-they’re thorough.
That process took quite a while. Once all was said and done we made a plan to start me out on some supplements to get my body moving in the right direction. Something important to note: when you’re fighting Lyme you end up fighting a lot more than just the Lyme. Lyme disease wreaks havoc internally. For me, that meant getting my gut flora and fauna (and merryweather!) growing and moving correctly, boosting my energy and getting my general inflammation down. Because inflammation of the body is inflammation of the brain. And that is not good.
The supplements are as follows: Fish Oil, KappArest, Blue Heron, NT Factor and a Multivitamin.
In addition to the supplements, many a blood test was ordered. The IgeneX test and the Western Blot being the most notable and controversial. As well as blood tests, I was also ordered an Adrenal Stress Index test. That mostly involved me spitting into a lot of small tubes at various points throughout a day after having done various things (ie. fasting, eating a crap ton of carbs, etc.) and then sending them away to some unfortunate person in a lab somewhere. Nothing more aggressive could happen until we got the blood work back and knew exactly what it was we were dealing with.
I tested positive for Lyme-which means that I had exposure to the bacteria B. Burgdorferi- and I tested negative for all of the co-infections. Which is great, but retesting at a later date is necessary. As it turned out, my body was not storing iron (I had the second lowest Ferritin count my Doc had ever seen). Just another thing to add to the list of things to work on. Our first move was simple: Add a probiotic to my regime, and an animal based iron supplement (taken with Vit C) to hopefully help my body retain more iron. In addition, we were also going to do IV infusions of iron once a week for four weeks to see if that improved my energy and overall well being.
We also added my first round of antibiotics: Doxycylyine. Duh duh duhhhhh! It was to last one month, at which time I would have another appointment and we would reevaluate. Now the tricky thing about antibiotics is that the goal is to kill the bad bacteria and whatnot hiding in your body. Unfortunately, to do that, it has to kill a lot of the good stuff, too. And that is not good for your body, your soul, or your spirit.
That brings us to (relatively) current day. The course of Doxy is over, and next we’re onto Rocephin. An IV antibiotic, much more aggressive, that I will have to have a PICC line inserted for. PICC stands for peripherally inserted central catheter. It will go in through my arm, and will then be threaded using an ultrasound machine through my veins till just above my heart. Once a day I will inject the antibiotics. In addition to my increasing list of supplements, we added D3, and a human yeast. Once the PICC line goes in, a med, or two more will be added. The thing about PICC lines is that prevention is the key. Many things can go wrong, and in order to have a clean experience you need to follow the protocol set forth by your Doc.
At the moment I am in a brief two week reprieve with no antibiotics in my system. Most of my symptoms are still around, however the nausea has backed off a bit and my appetite has increased. I would wager a guess that I’m slowly, but surely, edging my weight back up to a solid 108 (for now). These days I’ve been finding myself in between 98 and 103 most of the time.
In conjunction with my Lyme specialist I also have a Neurologist who believes that the episodes that I thought to be seizures were perhaps just vasovagal responses. To what? We don’t know. A 3-day EEG will be scheduled, and an endoscopy to rule out H. Pylori has been suggested. I’ve also found a fantastic local Chiropractic office where I also get massage several times a week-it helps immensely with the daily aches and pains.
It all seems like a lot, certainly daunting, and I have a long way to go still. At this point in time there is no sure fire way to eradicate Lyme disease. I say that because the word ‘cure’ means to relieve of symptoms-and surely that can happen. People can find symptom free living for the rest of their lives.
To that end, many people try different things. Right now I am trying a bit of a more traditional treatment route. My doc, though, is very open minded, knowledgeable and willing to do what needs to be done. Antibiotics-especially long, long-term-aren’t always the way to go. Everybody has different beliefs and ideas about what they need-which is awesome-and everyone reacts very differently to things. There is not one way to go that will help everyone across the board.
I do want to warn people of one thing, though. None of this comes without cost. I don’t mean physically, or mentally-though there is that aspect of it all-but I mean money. As Lyme is still an often debated and disbelieved disease, much of what you may have to go through won’t be covered by your insurance. It gets expensive. Luckily, there are programs out there that can help. Funds, grants, Care Credits, Medical Loans, etc.* There are programs out there designed to help. Some are very specific, some are very open. But the point is that it can happen. Nobody should have to turn treatment away just because they cannot afford it.
To close, I would like to one more time reiterate the importance of mental health. It’s important. And don’t be afraid to use the Lyme card, people. You’ve got it, use it. You know, like with your friends and family when you don’t want to make dinner, or something. It will come in handy.
Enough of my personal life.*** I will keep updating you all as my treatment/life progresses with Lyme. For now, though, I’d like to focus on bigger topics. More informative things.
Next week: I know, I know. I said I would talk about the IgeneX vs. Western Blot testing this week-but I ran out of time. It’s a big topic. I’ll save that for my next post-of which may be late due to the Holiday’s. Enjoy!
* A good place to start (more to come).
*** If anybody is interested in a more in-depth venture into my life with Lyme (and everything else), my personal blog.