K.C.'s Lyme Journey

Your biofeedback results only show one infection and a couple toxins.

You wake up refreshed, eager to see what the day is going to be like.

You are going crazy with wanting to run, jump, play but are “too busy” with tasks to immediately drop them and do what you want.

You have a job you enjoy.

You go through your activities mostly standing…or dancing to the music you have cranked up.

You move across the country and only need a week or two of serious downtime (because you caught the flu – like who doesn’t this time of year?).

Getting excited or having an adrenaline rush doesn’t frighten you for your wellbeing, and it doesn’t make you feel nauseous, exhausted or faint.

You can rarely enjoy a Zevia that contains, OMG, Caffeine!!!!! without crashing later.

You can eat 1 dessert a week an not have negative consequences.

A tiny bite of something sweet feeds your brain and doesn’t make you feel sick at any point afterward.

You can bind up and recover from mold exposure quickly (1 day).

This is me!!! So thankful to God for giving me my life and energy and strength back, and some I never had before.

BTW, check out my Top 10 Symptom List and My Current Supplements pages…they are updated!

It has been a week and 1 day since my immune therapy…  First day I felt better.  The days since then I have had a lot more energy/endurance/stamina.  I can tell the mold of the house affects me very specifically.  This isn’t fun, but the therapy is definitely working and I feel like I am approaching functional.  Who knows how amazing I may feel when I get away from mold.  Pain is still pain – and it still sucks physical and mental energy, and brain fog is MORE obvious – I am the goofiest ditz with a high IQ trying to put matches in the fridge, retrieving the wrong word or getting dizzy from someone repeating a motion in my periphery…

Otherwise, I am enjoying more daily function.  I’ve basically cleaned up/organized my room – deep down!  Walked all the way to the grocer coop and back because I wanted to…  Thursday, I got up and did some nothing stuff, helped cook by chopping 3 onions, then spent the day at the mall.  I needed to sit down and rest a few times, needed to let the chemical onslaught dissipate, but I was able to really enjoy it!  Tried on a bunch of shoes, inflaming my ankle and making pressure point flare up, but ended up replacing my 2 yr old worn-out but comfy Bass clearance sandals with a new $7 pair of Bass – oh yeah…I’m happy now!  After this we went to Starbucks and sat for a long time, then went home and I fixed GF pasta to go with my dinner!  Then we watched a movie.  I might accomplish this in 2 decent days + 1 GOOD day before.  It all happened in 1 day!  I couldn’t do this everyday – I would crash.  But I felt normal with only a few problems, not feeling like a blob only wishing for normal.

Friday, I had a busy morning to start, made my lunch sandwhich, and then saw the local chiropractic neurologist.  His work is always good and he worked a bit on my vertical tracking after the major adjustments.  Vertical tracking issues aren’t really that common, but do point to brain stem.  Hmmm.  I loved getting the electrostim with warm pads…it felt really good but I have hurt a lot today.  Something has changed and I’m stiffer not holding adjustments so well.   Is it that I am killing bugs?  Is it the increased activity?  Or…maybe I need to start back on magnesium.  I will go back to magnesium since it helps pain and sleep too.  After chiro, I had my lunch and dad drove around the area to locate the places we plan to show some foreign Duke students on Saturday.  I did feel exhausted after the chiropractor and only wanted sleep.  Got home around 6, and talked to a friend then took a nap.  Was up too late waiting for mom to turn off hurricane news.

Saturday – get up 9 am, run to the Coop to get my stevia soda so I can enjoy it with our student friends at a hot dog place – plan: hotdogs with A&W.  The hotdog joint was super nice and grilled up my GF hotdogs at no charge.  We tipped them anyway!  We were all over durham the whole day with our 2 student friends.  We had a wonderful time showing them the American marketplace – all kinds of stores that aren’t the mall.  Explained differences in stores.  Somewhere along the way dad decided we should show them Sam’s Club.  Good idea, but it was 2 or 3 pm and my body was screaming with exhaustion and pain, so I took a nap in the car after spending 30 minutes to calm myself down form 3 days busy. Then they showed us the neatest ethnic market that sells what they would normally buy – and the lady student I made nice friends with showed me FRESH mangosteen fruit!!  I got home and ate one tonight.  I also saw a 15lb bag of dried Shiitake mushrooms.  I think Dr A, my acupuncturist/DTCM, would have been in heaven, LOL!  Salted duck eggs were super neat too!  Then we went to Mellow Mushroom in the old Lucky Strike manufacturing plant and enjoyed various of their pizza’s.  This was a neat experience for our student friends.  I got GF Rabbit Hole – trading the sundried tomato for portobellos.  There was cheese pizza, Red Skinned Potato pizza, and a Thai Dye pizza.  I stuck to my GF pizza but others got a nice taste – the students had almost a whole slice of every one and said it was much better than what they have had before.  Thai Dye was the fave, hands down.  Then we walked for a bout an hour around the area, following the water fountain all the way to its end at the upper area of the former plant – taking pictures.  At the end of the day we exchanged hugs and the Mr. student gave us each very nice little gifts.

I am very tired but keyed.  Once I’m keyed up I can be exhausted but fail to wind down.  In the past I have run this till I crash.  I feel the tendenc still strongly in play.  Plan on ONLY going to church tomorrow, getting back and doing nothing for a day, maybe two – I am tired and do not want to overrun myself more than I already have.  Yet…I’m sitting here writing at 2 am.  On the way home we pick up a local friend so she can come spend the night.  We talk and stuff – high energy talking.

Now for the funniest thing.  Mom tells me after midnight that the dog has gum stuck in his fur! Where’s the peanutbutter to rub in his fur?  I, all voluntarily go after Spot with the remainder of a jar of peanut butter.  I bring it in the room and Spot looks at me poorly because he is afraid of what novel idea I have come up with.  I am staring him down the eyeballs holding a spatula and an open jar of delectable but fearsome peanutbutter.  I start rubbing it into his gummed up fur and he takes off and starts trying to rub it off on furniture.  Catch him once and he looks at me giving a pity party wimper (I have not hurt him…I know it because I’m really gentle).  We are cackling and drueling ourselves about him hating my idea – he does LOVE peanutbutter!  I had to chase him around the house because he was too fast.  It was amazing I could still chase after him that tired and still think it was funny – mom said she hasn’t seen me move like that in a LONG time.

And this…was my winding down.  Sweet dreams.  I never knew immune therapy would mean such a silly time with the dog…

I still have a way to go, need more treatment and am still in need of funds to continue treating.  So if you are interested, my fundraiser still has some time  left!  Thanks!

I like the idea of calling this MCIDS (Multiple Chronic Infectious Diseases Syndrome) instead.  Maybe Borrelia is the gateway organism, perhaps a different one…  Mind you, no matter what this terrible stuff is called, I still want the ribbon to be “Lyme green.”  The first rule is that the susceptibility is in you…not that the germ is SOO bad.  Soil theory.

I got a bunch of lab tests done recently.  The Lyme and coinfections did not show at all (to be expected). What showed significantly were viruses.  I have pretty high titers for HHV-6, Coxsackie A, and EBV.  Also showed a good number of antibodies to mycoplasma pneumoniae.  One of my practitioners said that Bartonella was mutating the HHV-6.  Not to be crude, but Bart is a slut!! LOL.  I think I’ve had Bart congenitally, just didn’t get Lyme from mom because she was on IV abx when pregnant with me, Lyme came later.  I’ve talked to other congenital Barties and we are a lot alike.  Anyway, I find all this fascinating.

So, I’m in Ga now.  Saw my LLMD yesterday, tested me and the Borrelia hasn’t shown up since I started ACT!  Babesia is also no longer active – Chanca Piedra kicked its butt.  But I did show the viruses and bartonella in muscle testing.  First time my LLMD has seen the Bart.  My current supplements have it covered.  I came into the office today to get a new natural immune therapy…super excited about this.  Not sure what to say about it except that I feel very blessed to get to try this!  I can already feel it working in various ways: about 30 minutes after receiving it I felt more relaxed.  Throughout the day, riding in the car to places I kept drifting off to sleep.  I was fatigued, but not in the bad heavy way.

My C4a came back high, C3a low – hinting mold.  My TGF beta-1 came back really high too!  In a week or so I will get a blood draw for IgE and IgG to a bunch of molds.  If I am positive for mold antibodies, it will be very important for me to leave my very moldy home (VERY moldy basement, and water damage to the upstairs).  The immune therapy won’t help the mold response, already asked.

My mind is going on so many things.  If this first round of therapy helps I will be getting another round or few…and I learned that I can try LDN for pain at the same time.  I also was taken off the NatureThroid, and am on Kelp 2x day instead.  It is much better in the long run 🙂 .

I am hoping to get better control of the POTS (Postural Orthostatic Tachycardia Syndrome) situation, licorice is part of that.  Did not post about this but had heat fatigue which is getting the long-standing POTS more attention.  This trip, the chiropractor said my ANS was as off as he has ever seen.  He will be rechecking me tomorrow morning, adjusting me more if it will help.  I’m hoping things look much better tomorrow.  I did tolerate standing longer today than I have in a while.

Another bit of good news: the edema is almost completely gone, just a bit at my knees – I’m sure that will be gone after a couple more weeks of ACT.  I’m eating almost any cheese I want now.  I do not crave cheeses but I can enjoy them.  I know the allergy to foods are gone by the fact that I don’t obsessively crave them, nor am I repulsed – and I don’t feel ill from eating it any more.  There is still so much I need to work on but it is steps in the right direction.

I feel depressed a lot just wanting to live a normal life.  Tired of all the sitting around not really able to do much without getting sicker.  Not knowing if what I’m doing will help me the fastest and best, or if it helping at all!  I don’t want to be a medical tourist or try everything that there is (although having that many options is both cool and frightening! – a strange kind of thrill seeker’s dream – my nightmare) before I find what works.  It’s been most my life, with 3 years of solid trying.  I want something that works, for it all, and I want it now.  When I have my appts and others capable of helping me with the plan to get better, I begin to feel hopeful again – and it lasts generally until my next big dip.

Support Snap Crackle Pop – KC Smith

I’ve been working on my ability to tolerate dairy for the past couple weeks.  I’ve been “coding” one cheese at a time every few days.  I guess I like white cheeses, because I can now freely eat:  Parmesan, Swiss, Mozarella, Provolone and Feta.  Going to keep working on it.  It will be interesting to see how easily the american cheese and cheddar cheese allergies go…those are the ones that were bad enough to show up specifically.

It deeply intrigues me that as soon as I had these few cheeses coded, I finally muscle tested for the first time ever to take colostrum!  I’m trying Jarrow’s Colostrum IgG supplement – who knows what it will do that I can tell separate from anything else.  My LLMD said back in January 2010 he thought it would be good to try ImmunoCal (a whey-based colostrum type thing), but I didn’t MT to it.  Never know…maybe I will.  I went through and muscle tested myself with help from a friend on all my supplements – so that is updated.  I updated it in the My Supplements page.

I’ve also decided to try regularly taking Ibuprofen and see if that helps the unending, unchanging joint pain, and other pains.  Trying to go easy on it because I am scared of NSAIDs – Just 1 or 2 ibu, when I eat 2x day.  After all, Tylenol was outted for its harm to people’s livers (mine has a hard enough time detoxing as is) and lowering glutathione.  I used to take Aleve back when I had migraines all the time – and know from more recent use that it makes my joints actually hurt worse  – crying, painful burning.  So that one is out.  Since I don’t do caffeine, only ibuprofen and aspirin are left.  I keep muscle testing for stuff pycnogenol and turmuric, but have not gotten a yes.  I occasionally get a yes to Polygonum but it doesn’t last and so I’ve never tried buying it.  I muscle tested to take Cumanda again – which has been compared and found about as effective an anti-inflammatory as feldene –  and it will likely be a little while before I herx from it, if at all.  I think once I’ve tried ibu for 2 weeks I will take it completely out and just see where my joints are without it, see if the Cumanda is doing any long term good.  Besides I don’t want to mess anything up when I deliberately celebrate life and eat gluten at my friend’s wedding – gluten = edema = diuretics…and I already looked it up.  Ibu and diuretics interact so I dont want to play with that.  Ok, much ado about nothing. 🙂

I also just updated symptom list to something more current. Just so that it’s clear where I’m at :).  I gave percentages on improvement by symptom!  Some things have improved but the improvement is slow…obviously.

Firstly, Shari set up a fundraiser for me so that I can get some things that would really help!!  Please, if at all possible, donate.  The end date of the Fundraiser is Sept 6.  And please share my page with your friends.  🙂  Thanks!

Support Snap Crackle Pop – KC Smith

It is so sweet of her, in the middle of her crazy busy life and also dealing with Lyme in her and her family.  I also want to say thank you to an extremely kind friend who makes this possible.  I would even say he’s a mentor…though I wish there was more time for mentoring.  I don’t think he realizes it, but he’s shown me a level of goodness I never knew anyone could give – a goodness that hits me so deep I have cried because of the example of Christ.  And guess what?  Goodness gives hope…even through human flaws.  Ever since then, there have been more people with the gift of goodness in my life and I am sooooo so thankful.

I am hoping and planning to actually take a single college course this fall.  I’m not giving up, I’m not staying out of the ball game.  I will become a naturopathic doctor bit by bit….Hoping for a hybrid course so I don’t have to be on campus a lot.  Since algebra/mathematics is my weak point, I will make that my single focus.

I got so caught up in life for a little while… but, the thyroid honeymoon is over.  I was really enjoying my fatigue improving from a 7 to a 5 for a couple weeks.  Then it crashed back to a halting 7.  It’s basically stayed that way even though thyroid dose is the same.  It’s even “tight” and sore-ish again.  I can tell other things are off and I’m herxing a lot with these codes.  Took a holiday from most everything – stayed on the just adrenal and thyroid, halved the dose of chanca piedra, trying to detox a bit with Lemon/EVOO.

I just feel electric fried.  Not sure if its just EMF or inflammation from bugs/yeast and herxing or both.  Nonetheless I’m pushing myself now to walk 30 minutes solid every day (unless it storms during my evening walking time!) – does help mood if nothing else.  I’m trying to take it easy otherwise, and keep emotions in check – something is off, or I’m “herxing emotions” like I can’t put on my Vulcan mask anymore.  Some things are really not fun to have to deal with.  Oh well…get through.

It was also nice today to have a friend come through for lunch.  He gave me an Algebra for Dummies book so I’m going to have fun with that…where’s the aspirin?!  I’m hoping to hang out a bit with Nat this week.  I want to drench myself in Hunter’s Earth so I can have a fun time in the woods while confusing the heck out of those nasty ticks – they get about two feet from me and turn around stunned.  Mwahaha!  Stay safe…they are MEAN this year.

So three days ago I got to start taking real but natural thyroid medication. 1 grain. All three days I have had enough energy to do some things. My room is clean…I can see the floor, and even some horizontal spaces other than my bed are clean. Heck..my bed is even clear! I’ve gone out into the scorching heat a bit and even if I didn’t feel great I was able to get through ok…and not be 100% wiped when I came back.

I did have an hour or two spell of too wiped out to do anything yesterday, but it came back after I did some serious tapping and drank a green drink. I wiped because of something emotional…hence the tapping.

I love it….love it…love it! I just hope it will stay. I have some gumption to get up and take my empty water bottles to the recycle bin, to get up and make myself a little snack – even a little meal – rather than keep sitting there and either not eat or just have a green bar.

The codes from my ACT class last week definitely managed to help my neck and joint pain a bit too…I noticed those improve before the thyroid, and since then it’s gotten even a point better.

Happy dance…. and no, I’m not manic and I’m not moving furniture around (what I do when I’m manic-ish). It’s amazing to just feel a little bit functional. I’m being sure to rest anyway and let some of that energy go into healing me… 😉 .

So…..I got to go to the rally! That went wonderfully. All the other Lymies there and my extremely kind roommate were the BEST! Wow….we understand each other. To me…that was my summer vacation. It was certainly hot enough, LOL.

Ok, so my writing skillz aren’t so great at the moment. Honestly it is an effort to write something that has any coherence at all.

Life is moving on, we are in a new season. Sumer is my favorite because that’s when I generally feel best. Enough sunshine and warmth (yikes…avoid heatstroke!) and finally – a friend to have fun with during it! Natalie and I have already been through some stuff together – I wondered where things stood and if a local friendship was worth it for a week. But yes it definitely is. When there’s a bump in the road you talk it out…even if you are too tired to talk it out. The weekends of pretending to be well are over – so we mostly just relax and go take a walk outside or stick inside and watch a movie. I got to see Eat, Pray Love, after all this time! It was really nice. Oddly enough, I liked Italy and Bali but didn’t care for the India part so much. Didn’t expect to feel like that!

There are ups and downs in how I feel. This week things have been a bit better – between Gary’s codes and new chiro.  Oh and…..something has helped my sleep tremendously.  I think it is the phosphatydil choline and getting enough potassium and magnesium.  I’m just glad something is working right now…

My family and I had started seeing a chiropractic neurologist, and he’s actually in the same state….better yet, under 100 miles away. I already really like his approach – I am getting hopeful that maybe we can fix the structure that has my neck and shoulders sooo messed up. We had an appt schedule for today, and I found out last night that parents cancelled it bc we are getting 1/2 a grassfed cow. Ok so yeah I understand the necessity at this point (and what lead to that necessity), but DANG!!! Just get my neck started being worked on and now I can’t see him for 2 months unless I pay to see him myself. It is so freaking crazy. I feel like I had the rug pulled out from under me.  I’ve seen chiropractors to help my neck here and there but could never stick to a program due to various things – namely, distance & expense.  I’ve bene through the routine before.  Start correcting the problem.  My neck holds the adjust for 3-4 weeks and then we go back to square one.  God….please NOT again.

I’ll see if I can possibly stretch appts 3 weeks between appts, but that feels iffy. If I could afford once every 2 weeks it would be ok.  This is just insane…I always try to have a tiny monetary cushion. But I’ve been using this monetary cushion up… down to $140 that is not absolutely reserved to something I have promised. I can cover 2 appts with that amount…but will be short for more.  I have some that I have absolutey promised to certain things and don’t want to go back on my word – I’ve seen enough going back on one’s word, that I don’t ever want to be the one doing it.  I hate it that everything is sooo stinking tight. I know God will provide for what I need…but at this point it is skin of the teeth, and it’s pretty hard to trust anything when family does things and doesn’t tell you.

I guess I could run an online auction…that’s a good suggestion.  Not sure what to auction…  I guess soap?  Someone will be all over me to be a sales person…ugh.  I have a couple ideas but I don’t know if it would work.  Aside from this sudden short-term need for money – I was specifically thinking of trying to raise enough to get a water ionizer/alkalizer and BioMat – super excited about that idea because they will be useful even when I’m recovered!

Here’s to hoping…

I just didn’t feel like writing for a while.  Basically same ole’ same ole.

Well it’s not so same ole’ anymore.  Symptomatically – same garbage as goes on constantly: joints/connective tissue problems, brain fog, stupid ear/sinus congestion that I have to keep from getting infected, edema, fatigue.  Ups and downs.

The new stuff!  There are some new people in my life.  We are enjoying the new church we are going to, more than that I feel more fed and energized for daily living to His glory – more love.  The prayer group is awesome.

Also, I have a new face-to-face friend.  I haven’t had one of those in THREE YEARS.  And no it’s not because of Lyme that I lost my childhood best friend – crazy family/church situ ripped us apart.  Yet, three years without a local friend at all, is a very long and lonely time.  So I spend the weekends with my new friends.  I pretend to be normal, even eat a little gelato, have a great time – and crash for the rest of the week.  I can’t keep up my weekends of pretending to be normal.  My friend saw this clearly on Sunday last weekend.  My body was just done, but I pushed for more, so I was sitting outside in a chair for three hours at a great graduation ceremony.  I spent and hour of it in front of God and everybody resting my head on my lap – feeling very very weak, kidneys in agony, maintaining my strength to make it home.  After that I had moderate hypoglycemic episode because it took so long to get to eat.  And I did the impossible:  Gluten free at Cracker Barrel (they don’t offer that).  Even though no alcohol is involved – it is physically as hard on you as it would be to go get drunk every weekend of your life!  But emotionally – It’s profound.  Just writing about it makes me cry.  I have really been so alone.  I keep myself occupied with GOOD internet friends.  but it’s NOT the same as having someone who calls you, and actually drops by your house.  I told her this week…if you stop by my house for any reason, PLEASE come right on up to my room – even if I’m sleeping and you wake me, I’m glad to see you.  What I like most about her is her heart….her honesty and warmth.  Thanks Natalie.

My paragraph about my new local friend doesn’t discount the deep friendship with people I would consider part of my “tribe.”  There is an inexplicable connection with my tribe….I love you guys!

I’m 2 weeks back in ACT classes too.  Very thankful for this.  There is, in a sense, new pathology, since I took the break from ACT.  The kidney stuff went awry during the break, and I also got that sinus/ear infection that will only 90% go away and I stay congested in my ears constantly.  I may be only 2 weeks back in but I know it’s what I need and I’m thankful to be back on course – we’re making headway in places we couldn’t before.  Been herxing this week – on top of exhaustion!

I’m a bit anxious to hear from Shoemaker on exactly what my HLA DRB DQB means – one bad detox gene, or two??  If I can get that oen good allele to dominate then I’d be good to go…  I think?  That stuff is confusing.   I’ve been being the ultimate Swaggernaut to get Swagbucks to trade for 2 $5 Amazon cards to get the book “Surviving Mold” on Kindle.  Complete geek-talk I know. hehe.

Still dealing with edema.  I’m better at catching when to take the diuretic.  What I hate is the low potassium – waiting for another blood test to be ordered to know if it’s any better after supplementation.  I feel drained of more than potassium though – it makes the POTS symptoms sooo much worse.  I feel lost in a really big way and I’m not sure which way is up.  I’m ok as long as there’s someone to talk to.  And hate to say it…but mommy is FAR from enough.  People who know me understand this.  At least I don’t panic unless it’s late at night and I don’t want to sleep despite being tired out of my head.  Hoping that improves soon.  it seems natural things for sleep make me depressed rather than help sleep for more than a week.  Oh well.

There’s other stuff to talk about, but hopefully I’ll write about it soon.  Oh…put out vibes for Mayday in DC!!!  I do want to go.  I haven’t felt like doing advocacy for May.  Too caught up in my own life.  But if MayDay can happen and me be there…I will be sooooo happy!