HEALING TAKES COURAGE

the boy's staples came out last week...

he was told he has to be careful so as not to disturb the healing process. he has to go easy so as not to put strain on his freshly healing incision. no heavy lifting but he has to be brave and gently stretch it even though it hurts. he must be patient with the process.

his broken skin and fragmented bones are healing. this is good.

so then why am i splitting apart at the seams?

last week was a haze of panic attacks and uncontrollable episodes of vomiting. the last few days have been better but i'm still bawling at the drop of a hat (and i need a hat to cover up my hair color drama)

what is going on?

is it one of the stealth pathogens that lie in my body - like thieves in the night waiting for a moment of unguarded weakness strike?

is it the years of watching my child(ren) fight their own battles with chronic lyme? and the invasive grief and holy hell fury i feel in the face of their suffering? when a momster can't make it better...well, that splits your heart wide and bleeds it dry.

is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?

is it just life? this lyme life that we live...with one crisis after the next happening and no time to set straight the brokenness in between?

or am i so broken and damaged and so lacking in resilience that i'm just coming unglued? (that's what my anxiety screeches in my ear)

it's probably a combination of all of the above.

yup. the past 10 years...coupled with the last 7 months have been a wild ride. chaotic. sorrowful. painful. bewildering. they've taken a toll. they've cut deep and wounded my momster heart.

and yet, piece by piece the boy is healing.

his surgeon's advice is worth taking to heart for all of us.

take care. be gentle. go easy. be brave.

healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.

but i can heal. we all can. never give up.

LYME LDI IMMUNOTHERAPY REVIEW

LDI/LDA IMMUNOTHERAPY is a fairly new treatment for lyme. i know there is a lot of buzz about it in the lyme commuity. some folks are finding it very helpful. others not so much. i have had several inquiries asking for an update on our experience with it. it's hard to believe that both sparky and i started this treatment almost exactly year ago today! 

(you can read my original post about LDI/LDA Immunotherapy by clicking this link)

it has taken a really long time for me to reach any sort of conclusion on whether or not it is helping us for several reasons:

first, for the longest time, i really felt like i had no definitive answers on whether it was helping, flaring, or doing nothing at all! 

second, it is a slow treatment process - the dosing occurs once every 7 weeks. even with using ART testing, it can take several rounds before you find the 'right' dose for your body... which means many months can go by before you even find a therapeutic dose! then it can take several more rounds at the therapeutic dose before you experience any sustainable/notable changes in symptoms. 

third, add in the usual unpredictability and complications that are par course for treating lyme and well, the results of LDI/LDA have literally been about as clear as mud for the longest time! 

fourth, there has been a lot of drama and trauma in this house in the past 7 months which has made writing difficult.

here's the basic crux of it: it's a mixed review.

it does not appear to have worked for sparky. he is no longer on it. but wait, we may re-start it down the road! 

it does appear to be working for me...although i have not used it to treat lyme (yet)... i really do believe that this therapy is helping my body heal - i think my experience with using it to treat my other issues (strep, mold, mycoplasma, chemical & food sensitivities) is relevant to the lyme/chronic illness community as many of the issues i have are co-morbid with lyme. i am working on writing an update about it.


i know most lyme patients are seeking info specifically for LDI in regards to lyme. so the remainder of this post will address my take on sparky's experience as he was specifically treated for lyme with it. 

for weeks i've been laboring over this update - ack. i'm so frustrated with it! i guess i've struggled with thinking what is the point of writing a detailed account when the simplified answer is "no, it didn't work".... on the other hand, i'm a detail oriented sort of girl and so i quite naturally digress to writing lengthy accounts. all things considered, even though it doesn't appear to have worked for sparky, i do think LDI is a worthy tool to consider in the fight against lyme. 

initially, LDI therapy was brought up in regards to using it to treat sparky after his relapse with lyme began in jan 2015 (read about his remission/relapse here)

parker has immunodeficiencies - primarily of iga, igm and igg. i also have immunodeficiencies so there could be a genetic correlation but there is speculation by his medical team that living with lyme has depleted his immunoglobulin levels. we did not know (still don't) know what caused his relapse in january 2015 but given all the immunological findings on him, we did feel like there an auto-immune component was a piece of the puzzle. 

therefore, trying LDI made good sense...yet, treating lyme is a tricky balancing act and knowing when to add additional therapies into your treatment plan often presents a conundrum. at the time the LDI was presented to us as a treatment option, sparky was 4 months into his relapse. he had only been back on abx and iv therapy to treat his relapse for 6 weeks. at that point, the abx treatment had stopped his downward spiral and he was just beginning to show signs of improvement.

we knew he was at a vulnerable place but the doctor that recommended he start on LDI has been part of his medical team since 2010. she knows his case and his body really well. we all agreed that LDI was the next right step even though we were concerned about provoking an inflammatory response while his body was already pretty reactionary. 

LDI THEORY note: 
basically, the goal of LDI treatment is to find a dose that is big enough to signal the immune system to calm down but small enough to not cause a huge inflammatory reaction. finding the right dose can take a few cycles... it is not unusual to have big flares when first starting. once the appropriate dose is found, there can still be flares in symptoms for the 7 days following each dose. as treatment continues, the patient should begin to experience a gradual lessening of symptoms and flares between each 7 week cycle of treatment. 

sparky's doctor wanted to avoid a big flare since he was still in a weakened state from his relapse, so he was prescribed a very micro dose.  additionally, his doctor felt that an underlying issue with strep could be contributing to his never ending joint pain. since LDI for strep does not historically cause huge flares, he was started on the LDI for Strep first. 

he had his first strep LDI dose in april 2015. 

he had no discernible response - good or bad - in any of his symptoms.

he was given the LDI dose for lyme the following week. 

unfortunately, even the baby dose caused a huge flare. 
(you can read details about that at The Pretty Pill Protocol)

this sucked and caused us concern but it was not entirely unexpected. altho' the duration of his flare - 6 weeks - caught everyone off guard. but there were so many variables impacting his health, that it was really difficult to know whether the LDI was the full cause of the flare or just a contributing factor. his medical team felt that it was important to keep him on it.

so we decided to stick it out and give it another try with an even smaller dose. 

7 weeks later, he was given his next dose. 
he did not have as big a flare and seemed to do a bit better for a few weeks following that one.

after his third dose, he had a flare and his body never seemed to right itself after that. his symptoms continued to be all over the map all the time and there was a slow but steady decline. 

all in all, he had 3 doses of LDI for lyme and strep. which is 21 weeks in total. 

his fourth dose was due during the first week that he was going to be in treatment in kansas. we debated whether or not to bring it and continue it or not. LDI is in pre-loaded syringes and it needs to be kept cold.  bringing it with us meant we'd have to travel with a loaded syringe on ice. with 2 days of INTERNATIONAL travel -border crossing, a 5 hour drive plus 2 flights - ahead of us we knew it could potentially complicate our travelling. trust me, crazy stuff happens when we travel! if you've been a blog reader for a while then you will know that we NEVER FLY UNDER THE RADAR (remember Sandeep and The Security Breach?) our trip to kansas was NO different. even without the syringe on board, there was airport drama this time around! 

while waiting for our connecting flight to witchita from chicago, imagine my surprise when i looked down at my boarding pass and discovered i was flying as a man! OKAY...AND NO ONE QUESTIONED THAT? there's a hit to the ego.

but wait that was no biggie compared to what happened on our return flight. that story is worthy of it's own post - it's one of those 'only that would happen to shannon' ones.

back to the reasons for leaving the LDI behind - when we made the trip to kansas we felt like we were embarking on a whole new methodology of treating sparky. we wanted to fully embrace the new. given that we had not really seen any benefit from the LDI and he was steadily declining, we opted to let it go.

i guess the rest is history as they say...

we went to kansas and that didn't work out so well. (read about that at hope is what we crave.) we're still piecing the puzzle that is sparky together - and working towards next treatment steps. we have several upcoming doctor's appointments and that fourth dose of LDI is still sitting in our fridge. i don't think he is in any condition to re-start it right now but i'm not opposed to re-assessing it for him further down the road.


if you made it all the way to the bottom of this dry drivel, thank you for reading! i don't know that it this review will be of much benefit but i hope some one finds it helpful!   

PS i am about half-way thru writing about my own experience with LDI/LDA. it's a more positive one.

CHRONIC SORROW

"chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. at it's core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. it is the emotion-filled chasm between "what is" versus the parent's view of "what should have been" 

                                                                                          ~susan roos

purged some pent up grief today...

sometimes out of nowhere you are struck by a torrential down pour of overwhelming emotion...some days i have a profound sense of grief for all that has been lost during the past 10 years of chronic illness. there's been a lot of loss. there may be many more years of it to come. adding to that, sparky's recent accident and subsequent hospital visits triggered many painful and distressing memories.

sometimes life just feels overwhelmingly sad and tiring.

grief. fear. sadness. living loss. they are emotions you feel with your whole body, mind and spirit. they are heavy and they suck and it hurts to walk thru them.

healing is hard. it's a steady uphill slog. it's hard, exhausting and ugly. plus i'm dealing with a minor major hair color disaster at the moment so totally NOT feeling so cute right now either. (just keeping it real). part of me is like, "ok, shan, whatever it's ONLY hair" but on the other hand, it is really NOT nice. it's orange and yellow and that's NOT okay.  

some days nothing feels okay and everything feels sad and ugly.

and it all suddenly overpowered me as i was riding up a mountain bike trail on mt. seymour. all i could do was sink into a crumpled heap on the side of the trail, helmet askew over my fried hair, doing the big, loud UGLY CRY.

the grief, the pain, the sadness just bubbled to the surface and tears flowed unchecked down my cheeks splashing on my glasses before slowly rolling off and free-falling to the earth.

as the last few fell, the settled and remained on my glasses. through my blurred vision their pretty purple-pink hue caught my eye.

i saw my pain on my glasses...but the pain on my glasses was reflected in a beautiful light.

PS sorry the snotty kleenex made the shot! but a good cry is very cleansing - especially of the nasal passages! also, i have no idea how or why my tears were pink. probably from too many chemicals on my head