LONG DAY IN THE LYME LIFE | HOME HEALTH, CHIROPRACTOR, AUTUMN LEAVES | 10/25/17 

+MyBioHack Thanks so much for taking the time to visit my channel and for leaving such a kind comment-it seriously made me smile hugely. :-) I have tried LDN-I believe it was early 2015 when we tried it-and while I know it had a lot of potential, and helps many people, it was not a good idea for me. I was only able to take one capsule at a low, low dose, and all of my neuro symptoms and pain, especially in my head but also throughout my body, flares so much I thought I was in the middle of an intense herx, but nothing helped calm the symptoms down except waiting them out, which wasn’t fun on a night I didn’t sleep a single second. So LDN is something I may try again in the future, but my body does not respond well to it as of now. I haven’t tried tuftsin-and to be honest, I haven’t even heard of it-but you can bet I’m gonna be googling it as soon as I can! Thanks for the info/name!

Lyme Steals God Heals some people are taking ultra low dose naltrexone. It seems to work on different receptors than ldn. I believe it still works on toll like receptors, which is good for lyme. As for tuftsin it's naturally occurring by the spleen and turns off th1/th17 cytokines which is also good for lyme ☺

+MyBioHack The one time I tried it, I think it was 4.5mg or something like that. Maybe it was 1.5mg per pill and then the full target dose would’ve been 4.5 (3 capsules), but either way, it didn’t matter because the lowest dose sent me into such a major flare. I’m so happy it does help others, though! Just shows, once again, how individualized our treatments have to be, even when basic biology is the same. We’re all so different! It’s cool, because it means life is never boring, but sometimes I’d welcome boring if it meant a cure. :-) And thanks, I’ll look up more about the tuftsin-thought I had heard and tried just about everything, but you sprung a new one on me! Thanks again!

+Charity Smith Hey Charity! I think I’ve only mentioned those things separately or as an offhand remark in the vlogs, so don’t worry, you haven’t missed a full explanation or anything-I think sometimes I refer to the underlying conditions but don’t necessarily explain the “why” behind what I have to keep on my face/head, and I forget others don’t always have to be in such a getup, because it’s become a part of everyday life, 24/7, with me. So to answer: The combo of things on my head helps with a few things. The main two issues they help are my type 2 trigeminal nerve pain, which is on the right side for me, and it looks something like this-very literally 24/7 I feel like someone is stabbing a fistful of steak knives in my eye, several long needles deep into my ear canal, and what I call a “fire-water” feeling (as if there is water that’s in fire, flowing under my skin) along the entire right half of my head/face/even down my jaw and neck/shoulder area at times. The blue cold pack helps with the trigeminal pain, as well as the chronic daily headaches I get, which quickly get to debilitating if I’m not able to get a new cold pack as soon as one has stopped being cold, and it helps with that fire-water feeling. I used to only have to use it during flares, but as the years have progressed, his particular symptom has continued to worsen, so that’s why I wear it 24/7. The single earmuff on my right ear is used to keep air/coldness out of my ear. While cold helps my head/eye pain, and the other things I mentioned above, it makes my ear pain worse. For over a year (late 2015-early 2017), I had to wear a full set of behind the head earmuffs (even while sleeping), with a hot hands packet slipped inside he pocket of the right ear side, because heat is what helps my ear. But I’ve done a lot of limbic system retraining, and thanks to the DNRS (Dynamic Neural Retraining System) from Annie Hopper, I’m now able to mostly just use the single sided ear muff and not have to worry about the full earmuffs behind my head. However, now that it’s winter, I may have to more frequently use the full behind the ear version with hot hands inside, due to the colder weather. As far as sensory issues, I have a video from SSSVEDA this last April-I think it’s the one where the thumbnail background is royal blue, and the picture cutout is my husband bending down to smile for the camera while pushing me in my wheelchair-and I have my head and all its necessary aids (earmuffs, noise canceling headphones for sensitivity/sensory overload, a mask for smells, and more) on my body. I mention that video simply because I have a picture in that video that shows everything I have to take to be able to leave the house, and it includes everything I take with me for pain, anxiety, sensory overload, and more, so I figured it couldn’t hurt to mention it in case you’re curious about that. I’m all for curiosity! Thanks for your questions-Please let me know if I need to explain more! :-)

Lyme Steals God Heals wow, you are such an encouragement for those of us going through illness! I'll be keeping you in my prayers...God Bless you and your sweet husband♡♡

+Charity Smith I’m just glad to be able to offer any amount of encouragement or solace, thanks for reaching out and asking questions-curiosity makes the world go ‘round. We try to live a super open book life to show others they’re not alone on this journey, in the highs AND lows, ups AND downs, until healing comes. God bless you, and I will be lifting you up, as well, for whatever needs you have in any given day!

+fmnstwriter 1.) I love you, and I love that you used her proper name when inquiring. :-) 2.) The short answer is yes, but no. The explanation: I can technically get fluids through Claire Bennet, BUT only on the flush schedule every 4 hours. I’ve tried to do more, but the issue is the volume. The IV obviously helps surpass the issue of volume in the GI tract, so that’s why we use that for fluids. Before I started having increasingly more GI issues this past spring, I was able to drink my 2-3 liters a day needed to keep these buggers and the neuro/endotoxins they produce moving out of my body. Once the issues started happening, though, and I was unable to drink much at all without triggering many symptoms, we realized a lot of it is a volume issue when it comes to the water, even when bypassing my stomach and going into my jejunum/small intestine via Claire Bennet. So with the flushes I only get about 600ml of water a day, which helps, but is nowhere near enough for my needs. And this is coming from someone who used to detest water with every fiber of my being.

Thank you for answering. My foster care kiddo (I'm his advocate) takes all of his fluids and food through a G tube. This video made me wonder how he is possibly getting enough fluids. He is a lot healthier than you are in terms of his nutritional needs, but it's something I am going to check on regardless.

+fmnstwriter Anytime! I hope it helped answer what you needed to double check on that. It’s awesome that you’re an advocate for others in these positions-you are making a MAJOR difference in the world, love you girl.