'Ello! Let me just preface this by saying that my brain is not on point today. Major concentration issues. As my dear friend would say, I'm on the struggle bus. But I said I was going to get this post out, and so it's going to get done, damn it! So if it's a bit rough around the edges, please pardon my fuzziness. Also, I had a really fun day playing disc golf with my husband and our friends at Water Works in KC on Sunday, but my body is punishing me for it with some pretty intense cramping/twitching and overall achiness. It was so totally worth it though. I hadn't played in over a month and it was sorely needed. Plus I love spending time with my friends. Luckily I have today and tomorrow off, so I will be doing lots of Epsom salt baths, drinking lemon water, and taking extra curcumin and magnesium! (Using these methods and others to detox when you have Lyme is really important. I also have an MTHFR gene mutation which slows down my body's ability to detox successfully, so it's crucial that I give it all the help I can).
|Can't say I made many putts, but this one was a pretty good one!|
|Not mad at that form after not playing for so long!|
Overall I have been feeling a lot less fatigued the past few weeks, and I'm generally pleased with the way I've been feeling since being off the IV antibiotics. My main issues have been blurry vision/other visual disturbances, ear pain/fullness and lightheadedness. So pretty much all the symptoms I've had the longest. Last Thursday I saw a new LLMD here in Kansas and have decided to definitely cut ties with Dr. P in New York. The new doctor, Dr. S, has thinking that's very much in line with what I believe in; namely trying to get to a point where the body can do what it was meant to do with as little medical intervention as possible. His specialty area is neurocognitive functioning and how all body systems affect the brain in some way. He talked a lot about how the gut and brain have a connection, which I do believe. And that being on long-term antibiotic therapy can sometimes further degrade the connection, causing all kinds of complications. He also talked a lot about the hormonal and autonomic pathways and how they can be disrupted with Lyme. He uses several different kinds of brain scans to pinpoint areas of decreased functioning and then creates individualized plans from there. It also gives some form of measurability to a disease that is usually highly unmeasurable.
|QEEG is one of Dr. S's brain scanning methods. It looks mainly at
brain "power" through different brain waves. Interesting.
So his approach is relatively non-aggressive, especially compared to what I've been doing with huge doses of IV and oral antibiotics. He believes in using herbs, supplements, and food to replenish the micronutrients that the body is lacking to provide its basic needs. I can dig that. I appreciate the way he integrates science into a holistic approach.The only real down-side is that supplements and herbs aren't covered by insurance in any way. Neither are the office visits or any treatment with the LLMD, of course. It's going to be around $400/mo straight out of pocket to kick the antibiotics and commit to herbals and the new doctor. But I'm committed to trying the herb/supplement path. And I think now is a good time for the transition, while I'm between semesters and my stress level is as low as it's going to get. I worry a little about what happens if my health slips backward, but I can't dwell on it. I realize that it's all trial and error with Lyme, so I'm certainly not putting all my eggs in this proverbial basket, but I am going with my gut here.
Since I just had to gather all of my past treatment information ahead of my appointment and haven't had the chance to misplace it yet, I'll give a rundown of the antibiotics I've been on in the past year since I've been meaning to include it in a post (in order of when I started them, beginning in November of 2015):
Yikes. You'll notice that most were for just two month periods. That's because it's a guessing game. Generally, during monthly appointments, LLMD's will ask which symptoms are better, which ones are worse, which ones have stayed the same, and which ones are new. Based on that information they decide what to change about your treatment plan. I've also had my supplement and herbal regimen tweaked many times, but most of the core elements have remained the same for the last 6 months. I've definitely noticed an overall higher level of wellbeing since implementing a regular supplement regimen. Here's what I'm currently taking (most are 2x/day except the B-vitamin, selenium, and zinc, which are only 1x/day):
*Artemesia (likely cutting out on advice of Dr. S)
*Curcumin (a real life saver for pain/inflammation)
*Magnesium Glycinate (will switch to magnesium threonate per Dr. S when my current supply runs out -- that shit's expensive)
*Saccromyces Boulardi (probiotic)
*Hyperbiotics Pro-15 (probiotic)
*Methylated B Vitamins
*Vitamin D drops
*DHEA (tapering off on advice of Dr. S)
Taken in the past:
*BLTA Microbial Balancer
*Cat's Claw (Samento)
I'm planning on introducing Dr. Stephen Buhner's core protocol soon as well. His basic recommendations are Japanese Knotweed, Cat's Claw, and Andrographis. Green Dragon Botanicals is a company Dr. Buhner works closely with and they prepare tinctures and capsules that incorporate all three herbs (along with sasparilla and dandelion, which I need to look into more) at the proper dosage, which is nice. It's always a pain when you are trying to match recommended dosages with pills that are either too potent or too weak. It also helps that Dr. S is a fan of Buhner's work and that he is already knowledgeable about it. It made me feel even more comfortable with him since I had already been researching Buhner prior to my appointment.
Dr. S also definitely gave me some new perspectives and things to think about. I've been frustrated at times with how much of this treatment has been left in my own hands (as opposed to other illnesses that have set protocols for treatment). I've had to really dig into research and listen hard to my own intuition when deciding what paths to take, because there are just so many options and schools of thought out there. To be honest, yes, I do a lot of research and I synthesize as much as I can, but my brain is not what it used to be when it comes to analyzing information. So I do my research and let it sink in, and then I ultimately go with what feels right for my body at the time. Also, I'm an INFP, so I've come to terms with the fact that I weigh intuition more heavily than I do logic. It's okay. So far my intuition has served me well in life.
I'm starting to see Lyme more as something I have to manage than something I have to eradicate. My previous thought was "I need to get all of these bacteria out of my body and then I'll be well again.". Through tons of reading and research, I'm coming to believe that it's going to be more of a long-term maintenance and monitoring situation. There's not going to be a silver bullet that gets rid of all the spirochetes and restores my health completely. But I can do things that support my immune and other bodily systems, and if I do them for long enough I have hope that I can achieve a "normal" level of functionality. I really just want to be at a point where I don't have to ask myself, "What will I have to pay if I take the dog for a walk this morning? Will it mean I don't have the energy to get through my work shift later? Or if I can get through my shift, will I then have an attack when I get home because I overdrew my energy reserve?". Speaking of which, my eyes definitely need a screen break so I'm going to wrap this puppy up. And speaking of wrapped up puppies (!), look at this cute little guy who has been my companion as I sit writing to you. He's smelly but adorable.
As always, please feel free to get in touch with me if you have questions about any of the things I've talked about, if you are having symptoms and wonder if it could be Lyme, or if you're already in the midst of the Lyme maze, either fighting for yourself or a loved one. Sometimes you just need someone to talk to about it. I totally get that.