Mama has Lyme ADHD
First, a small update. I don't think the mat is doing enough to justify its cost. We still have a few weeks to decide, but John has equated it to a glorified heating pad. Paul has fallen asleep on it, and thinks it's comfy. John said he can't sleep on the rocks because it's uncomfy. For sure, it's warm, but I'm not sure it brings any other noticeable advantages. LDN has been rough the last 2 days. John's noticed increased depression, and a lack of sleep no matter when we take it. We discussed with Dr. K and she says to forget it for now. Back it goes to the supplement graveyard with all the other things that aren't working now.
And... drum roll please!!! John's Paleo diet is either helping, or he's having a growth spurt. He weighed 69 lbs. this morning. This is up 7 lbs. since July 31, and despite some gut issues. Woot, woot! We will take it.
Anyway...
I feel like I have Lyme ADHD. I really don't like sitting on whatever we are doing, even though we are supposed to try whatever-it-is for 6 months. Maybe it's my skepticism, or the pessimism that radiates from John. Regardless, I'm already looking at the possible "next-best-thing" before we've even given 6 months to whatever we are currently doing. Perhaps it's the hopeless feeling that nothing is working good enough, and fast enough for us. We've been battling consciously with conviction for 2 years, and have struggled since 2010. Can you blame me for always trying to figure out, if not this, then what? Yeah, it's a marathon, not a sprint. Anyone who knows me knows I don't run long distances, and I don't sprint unless there's a fire. So, this analogy doesn't work for me. Besides, my kid is frustrated and our family quality of life is less when we all have to see him suffer.
Flashback to December..
When we first got John's "confirmed by a second doctor" diagnosis, I turned to Amazon for books on beating Chronic Lyme. The two authors who got my money were Richard Horowitz, MD (the authority on Lyme from a Western medicine approach) and Stephen Buhner (the authority from an herbalist/naturalist/Eastern medicine approach). Reading two books right off the bat was hard. I didn't know which to put faith in, as both tended to be above my head. The overwhelming nature of being a constant caregiver, not to mention my own health issues coupled with the realization of the diagnosis and some real heavy literature.. I just expected too much of myself. The books have sat, lightly skimmed, otherwise undigested. One has stayed in the bathroom, in the hopes that maybe I'll get inspiration there, but I'm not one to camp out in the bathroom with a good book, let alone with a challenging one.
Fast forward.. to today
I was brought back to Buhner's book after reading of positive results online in a Lyme forum and talking back and forth with another mom who has spent time at the same Utah clinic as we have. I never gave Buhner's method a fair shake due to its overwhelming heavy content, so today, I picked up that 500+ page book again. And felt overwhelmed. Again. Well, how does one eat an elephant? One bite at a time. How does one digest a big book? One page at a time. Nothing I've been doing has made a hill of beans difference, why not start reading? And so I did.
The beginning of the book discusses how the herbalist/naturalist approach is different. Instead of looking at Lyme as something to attack, why not try to understand what it's trying to do in your body first? I'm gathering this approach is more comprehensive.. a little offense, a lot of defense, kind of like playing the last period of a hockey game. Control the puck, if the other team is too busy defending their zone, they can't attack yours. Dump and chase after it if you have to. Don't let them out of their zone, and don't do anything stupid and get penalized. That analogy isn't half bad, or is my ADHD to anything Lyme showing again? Anyhow, a little ways in, it says something like "You know, if you'd just like to start treating Lyme, and skip over the medical data supporting my method, then skip to Chapter 8." Can you see me dancing like Elaine Benes? Yeah, me neither, but mentally, I did!
So, I spent the latter part of the afternoon looking through Buhner's Chapter 8, as well as consulting his website. I poured through the comments, searching again for the Holy Grail, the kojibroda (family inside joke about a rare Polish mushroom from my beloved father) of information to heal John. The protocol calls for a few basic supplements/herbs, followed by individualized treatment based on symptoms. I held a family meeting with John and Paul to which symptoms to prioritize (fatigue, depression, pain), and spent some time bouncing back and forth between Amazon, Mountain Rose Herbs, Sage Woman Herbs, and searching for why Buhner recommends Kratom powder, and then which powder. Phew. Exhausting. The good news is that I already heard of many of these herbs and supplements. Some are fairly mainstream, like SAM-e, Echinacea, Cordyceps (mushroom I've heard of before when healing BigDog of cancer), arnica, L-acetyl carnitine, and Co-Q 10 (things my favorite rock-star-hockey-mom, Mrs. O, recommended to me).
Things will trickle in soon from the various vendors. We will do as Buhner's recommends, adding little by little. Our next appointment is with our homeopath at our main Lyme clinic on Monday. I'll consult with her about what my thoughts are before switching it up, and I'm sure we will be on the same page. Heck, several of her treatments like hypericum and kali phos were also in Buhner's book. As I like to say, here goes nothing! But it's not really true. It's more like here goes several hundred dollars and another prayer that something will work.
I refuse to give up. Suck it, Lyme.
And... drum roll please!!! John's Paleo diet is either helping, or he's having a growth spurt. He weighed 69 lbs. this morning. This is up 7 lbs. since July 31, and despite some gut issues. Woot, woot! We will take it.
Anyway...
I feel like I have Lyme ADHD. I really don't like sitting on whatever we are doing, even though we are supposed to try whatever-it-is for 6 months. Maybe it's my skepticism, or the pessimism that radiates from John. Regardless, I'm already looking at the possible "next-best-thing" before we've even given 6 months to whatever we are currently doing. Perhaps it's the hopeless feeling that nothing is working good enough, and fast enough for us. We've been battling consciously with conviction for 2 years, and have struggled since 2010. Can you blame me for always trying to figure out, if not this, then what? Yeah, it's a marathon, not a sprint. Anyone who knows me knows I don't run long distances, and I don't sprint unless there's a fire. So, this analogy doesn't work for me. Besides, my kid is frustrated and our family quality of life is less when we all have to see him suffer.
Flashback to December..
When we first got John's "confirmed by a second doctor" diagnosis, I turned to Amazon for books on beating Chronic Lyme. The two authors who got my money were Richard Horowitz, MD (the authority on Lyme from a Western medicine approach) and Stephen Buhner (the authority from an herbalist/naturalist/Eastern medicine approach). Reading two books right off the bat was hard. I didn't know which to put faith in, as both tended to be above my head. The overwhelming nature of being a constant caregiver, not to mention my own health issues coupled with the realization of the diagnosis and some real heavy literature.. I just expected too much of myself. The books have sat, lightly skimmed, otherwise undigested. One has stayed in the bathroom, in the hopes that maybe I'll get inspiration there, but I'm not one to camp out in the bathroom with a good book, let alone with a challenging one.
Fast forward.. to today
I was brought back to Buhner's book after reading of positive results online in a Lyme forum and talking back and forth with another mom who has spent time at the same Utah clinic as we have. I never gave Buhner's method a fair shake due to its overwhelming heavy content, so today, I picked up that 500+ page book again. And felt overwhelmed. Again. Well, how does one eat an elephant? One bite at a time. How does one digest a big book? One page at a time. Nothing I've been doing has made a hill of beans difference, why not start reading? And so I did.
The beginning of the book discusses how the herbalist/naturalist approach is different. Instead of looking at Lyme as something to attack, why not try to understand what it's trying to do in your body first? I'm gathering this approach is more comprehensive.. a little offense, a lot of defense, kind of like playing the last period of a hockey game. Control the puck, if the other team is too busy defending their zone, they can't attack yours. Dump and chase after it if you have to. Don't let them out of their zone, and don't do anything stupid and get penalized. That analogy isn't half bad, or is my ADHD to anything Lyme showing again? Anyhow, a little ways in, it says something like "You know, if you'd just like to start treating Lyme, and skip over the medical data supporting my method, then skip to Chapter 8." Can you see me dancing like Elaine Benes? Yeah, me neither, but mentally, I did!
So, I spent the latter part of the afternoon looking through Buhner's Chapter 8, as well as consulting his website. I poured through the comments, searching again for the Holy Grail, the kojibroda (family inside joke about a rare Polish mushroom from my beloved father) of information to heal John. The protocol calls for a few basic supplements/herbs, followed by individualized treatment based on symptoms. I held a family meeting with John and Paul to which symptoms to prioritize (fatigue, depression, pain), and spent some time bouncing back and forth between Amazon, Mountain Rose Herbs, Sage Woman Herbs, and searching for why Buhner recommends Kratom powder, and then which powder. Phew. Exhausting. The good news is that I already heard of many of these herbs and supplements. Some are fairly mainstream, like SAM-e, Echinacea, Cordyceps (mushroom I've heard of before when healing BigDog of cancer), arnica, L-acetyl carnitine, and Co-Q 10 (things my favorite rock-star-hockey-mom, Mrs. O, recommended to me).
Things will trickle in soon from the various vendors. We will do as Buhner's recommends, adding little by little. Our next appointment is with our homeopath at our main Lyme clinic on Monday. I'll consult with her about what my thoughts are before switching it up, and I'm sure we will be on the same page. Heck, several of her treatments like hypericum and kali phos were also in Buhner's book. As I like to say, here goes nothing! But it's not really true. It's more like here goes several hundred dollars and another prayer that something will work.
I refuse to give up. Suck it, Lyme.
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