1 Week of Feeling Better, Adventurous.

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!

Not so much Lyme…

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.