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.

THE HAT STORY

hats. specs. thrift. these are a few of my favorite things! (bikes too, but that's a whole other story and crows! and coffee!)

if you've been a blog reader for awhile now, you probably know of my love for finding bargains at retail stores - my long standing faves being ross dress-for-less and target. even though most of my blog is about our family's journey with lyme, i've  been known to write about some of my ross shopping adventures. (read about my travelling pants adventure here). despite my honed bargain shopping skills even these stores now exceed our tight budget... so for the past 2 years, i have tried to exclusively shop at thrift stores. no more ross or target for me! (mind blowing, i know!) 

there are a few retail exceptions though... Zenni Optical for my specs, Forever 21 & Ardene for funky jewelry...and then there is this hat i recently bought from the hudson bay company. however, it was sort of a thrifty purchase as i did use a gift certificate to help purchase it. i found the gift certificate in a dresser i inherited from my nana (grandma) many years ago!

my nana's dresser

 the gift certificate was from 1995... which, in my daughter's opinion, makes it so old it's practically vintage. lol. indeed, it was so old that i was actually worried about trying to purchase the hat with it. in fact, it took me nearly two weeks from the time i saw the hat in the store until i went back and purchased it. 

i currently live with a social anxiety disorder that has been triggered by a post-strep autoimmune illness. (read "this is my brave" here), so going into a store and making a purchase can produce anxiety for me. add to that, a vintage gift certificate that may or may not still be valid and i was worried i'd get arrested or questioned - like they'd somehow think i was printing fake vintage gift certificates! i know it's so irrational but these are the types of thoughts that were running through my mind.

yet, the hat was calling my name! i was imagining all the looks i could create with it and the bonus of not having to spend time and energy on styling my hair, well, the allure of that finally trumped my quirky anxiety. 

off i went to the bay. before going though, i took the time to do my hair and create a look that i hoped made me look trustworthy and un-scammer like. when i finally showed up at the cash register, i nervously presented my gift certificate and breathlessly murmured, "i have this gift certificate. i have noooooo (insert high pitched squeak) idea if its still valid."

the sales lady took it from my shaking hand. she lifted it to the light and inspected it. then she asked the clerk next to her if she'd ever seen anything like it.

i tried my best to look nonchalant and legit. 

then the other clerk said, "oh i've never seen anything like that. you need to call management and have them come take a look."

i nearly vomited.

5 heart stopping minutes passed before the manager appeared. i could feel my heart pounding in my throat as i saw her approach. the first sales clerk waved the certificate under her nose. 

"what do you make of this? have you ever seen one of these?"


the manager grabbed the certificate and turned it over and over and over in her hands. then she held it up to the light.

i suddenly felt woozy. fearing i may topple over, i grabbed at the counter to steady myself. in doing so, i dropped my purse which clattered noisily to the floor. the manager's eyeballs left the certificate and gave me and the purse at my feet an appraising once over. then she returned her gaze to my face with one eyebrow raised.  i stopped breathing. i knew with absolute certainty she was sizing me up as a counterfeiter.

then she exclaimed, "oh wow! i haven't see one of these in 20 YEARS!"

it took me a full minute to start breathing again. 

then she called over another manager. and they began excitedly exclaiming over my gift certificate and they wanted to hear where on earth i'd found it! so i started to tell them my story. before i knew it, there was a total of 4 sales clerks and two elderly customers milling around and listening to my story. then suddenly everyone was reminiscing about the good old glory days of the hudson bay company.

oh my word. it was a total hoot but by the end of it all, i was more than happy to pull that hat on low over my brows and flee the store. no more retail for me. 

there's a bit more i'd like to add to this little hat story...as my love of hats has been born out of suffering. i wasn't a hat person until i became profoundly ill with neurological Lyme Disease 10 years ago.

during my sickest years, hats became a way for me to still feel styled & put together when my body was falling apart. being someone who finds creative inspiration & joy from putting looks together this was important to me. in essence, hats helped me feel like me when the symptoms of Chronic Lyme left me with a body that felt foreign, uncomfortable & unrecognizable.

more thoughts on hats, thrifting, chronic illness (& biking) coming to my blog soon. as well as an update about the LDI/LDA Immunotherapy that sparky and i have been undergoing for almost a year now. (i've had a number of inquiries about this specific treatment and i'm sorry the update is taking so long!) 

i'm beginning to write again and it feels good. really good. yet, as good as it feels to be able to start blogging again, i have to admit, i am still having FB anxiety. psshtt! this social anxiety thing is a real beast to contend with but i am just allowing myself to be okay with that. having never been anxiety prone, it's weird to suddenly live with it but that is just the way it is right now. i am wanting to be as real about it as i can and not not feel silly or less than or beat myself up over it. that's just where things are at for me. 

FB weirdness aside, i have recently activated both mine and our dog harrison's instagram accounts again. (as if posting as a dog isn't weird or anything.) i am comfortable hanging out on there and am enjoying creating mini posts. i don't always feel that what i post there is blog 'worthy' so please feel free to find me on instagram under @ticksandtrust. and the dog can be found @worldaccordingtoharrison

thanks for reading my little hat story!

THE PRETTY PILL PROTOCOL (& mini-update on LDI IMMUNOTHERAPY)

parker started a new protocol this week. we're calling it the pretty pill protocol because, well, the pills are pretty. it is called Sporanox. There is always anxiety about starting or adding any new med into treatment because often symptoms get a lot worse before they get better. as purdy as these pills look, they look extra scary for a few reasons.

first, because he's never been on them before so we have no idea how his body will react. second, his doctor is using these pills as part of a protocol to target mycotoxin issues in his brain, sinuses and lungs. treating these can be tricky and we know the die-off (herxing) could be intense.

i'm posting about this because i would love to get feedback from any other lyme or mold or biotoxin illness warriors out there that have 'been there, done that'.

speaking of been there, done that - 

i am working on a post to update you all on Parker's LDI Immunotherapy . he began this treatment therapy about 11 weeks ago now. i posted about it here. i have had a few emails and inquiries from folks asking how things are progressing on this treatment. i am so sorry that i have been slow to respond to inquiries and in posting an update! i know there are many people in the Lyme community researching this treatment and anxiously waiting to hear if it is working for those that are undergoing it.


here's the reason for the delay - parker had a very severe flare and got very ill within 24 hours of receiving his first dose of LDI. he was essentially bed ridden for the six weeks following his first dose. his medical team was baffled by his intense response as he was given the minutest dose. the tricky thing has been trying to figure out if the LDI Immunotherapy was just a contributing factor or the cause of his flare. i haven't wanted to post an update until i felt like we had a clearer understanding of where things sat with this therapy or even if his medical team would continue to utilize this treatment for him. 

at this point, his medical team believes the LDI contributed to the downward turn in his condition but (as per usual with lyme), there are about a million and one variables that may or may not have made things worse for him! we are still sifting thru all the 'rubble' but DR H did feel it was important and vital for him to continue with LDI Immunotherapy. so he received his second dose about 3 weeks ago. he did have a flare of symptoms again - but it was less intense and only lasted about a week. the past two weeks have been a bit better for him. we are hopeful this is a good sign that his body is having a favorable response to the LDI. albeit, now that he's feeling a bit better it makes starting the pretty pill protocol a whole lot less appealing - especially considering dem purdy pills could make him feel less than stellar.

 i promise i will be posting a more detailed and specific post of his journey with LDI in the coming weeks and months - just waiting til he's had a few weeks under his belt with this second dose in his system to render any judgements or opinions on this treatment protocol!

LDI IMMUNOTHERAPY FOR LYME

sparky is starting LDI Immunotherapy today (april 21). 

this will be the first dose of what will likely be many.

sparky has been fighting chronic lyme and co-infections for 5.5 years now. every system of his body has taken a real beating. he has had a chronically elevated lymphocyte count and elevated B cell count since getting sick in sept 2009. in the last few years he also developed immunoglobulin deficiences - specifically in sub-classes IgA, IgG and IgM. since he fell ill again in january 2015, his white blood cell (WBC) count has been elevated and steadily climbing as well. 

here's a very short and simplified explanation of what that all means;

LYMPHOCYTES
lymphocytes are a small white blood cell that play a large role in defending the body against disease as well as being responsible for immune responses. there are two types of lymphocytes - T-cells and B-cells. the B cells make antibodies that attack bacteria and toxins. the T cells attack the body cells that are overtaken by a virus or bacteria. lymphocytes are often present at sites of chronic inflammation.

IMMUNOGLOBULINS (Ig)
immunoglobulins (Ig)or antibodies are proteins made by the immune system to fight antigens (antigens are foreign substances such as bacteria, viruses or toxins). the body makes different immunoglobulins/antibodies to combat different antigens. IgA, IgM and IgG are Ig subclasses and are often measured together (done via blood test). the results give doctors important info about how the immune system is functioning - primarily in relation to infection and autoimmunity. sparky has had extremely LOW levels & deficiencies in ALL three of the following Ig sub-classes for several years now.

IgA - is present in mucous membranes and helps defend the body against respiratory illnesses and GI tract infections. 

IgM - found in blood and lymph fluid. first antibody made by immune system to fight new infection

IgG - most abundant antibody and protects body from bacterial and viral infections

WHITE BLOOD CELL COUNT (WBC)

WBC are important part of the immune system and help fight infections by attacking bacteria, viruses and germs that invade body. elevated counts generally mean your body is fighting an infection and/or indicate other problems such as inflammation, trauma, stress, allergies etc.

Ok, phew! are you still with me? i know that's a lot of medical stuff to digest - and actually it's just the tip of the iceberg but hopefully enough that you can grasp a bit of an understanding.

WHAT DOES ALL THIS MEAN IN RELATION TO SPARKY?

in short, this basically means that his immunoglobulin deficiencies, high lymphocyte & b cell count coupled with the elevated WBC are indicative of BOTH active infection and an inflammatory/autoimmune response to that infection. his doctors believe this makes him a good candidate for LDI immunotherapy.

what is LDI immunotherapy?
(oh no! here we go again - this is a simplified explanation)

LDI therapy was originally named Enzyme Potentiated Desensitization or EDP. EDP/LDI is a treatment that has been used in europe for over 40 years for all types of allergies, autoimmunity, and other immune hypersensitivity reactions. recently, doctors have begun to use it to treat lyme and co-infections.

it is done with injections of low dose antigens - an antigen is a toxin or foreign substance that causes your immune system to produce antibodies to fight that specific antigen. (in sparky's case dead lyme/borrelia is the antigen being used). the antigen(s) are combined with a special immune moderating enzyme (called beta-glucuronidase) to induce the production of antibodies and immune regulator cells. these cells train the immune system to not have an over-excited response to the antigen.

the key to LDI is this enzyme - beta-glucoronidase - which attracts certain specialized white blood cells called t cells that are involved in the immune response and makes them pay attention to the specific antigens that are mixed with the enzyme. the enzyme then causes a down-regulation of only the part of the immune system that was over reacting to the included antigens.

LDI injections are given at 7 week intervals and the patient receives a dose of antigen that ranges from 1C to 5C dilution.

however, in lyme patients, the reaction or symptom flare that the LDI can trigger can be quite severe and difficult to control. in LDI therapy for other conditions, the 'rescue' for pulling a patient out of a bad flare is the administration of the corticosteroid drug called prednisone. prednisone is an effective immunosuppressant and the use of any sort of immunosuppressant can be very dangerous for a lyme patient. therefore, in an effort to stave off any sort of huge reaction, lyme patients are generally started at the lower end of the dosing dilution scale.

sparky's body is already very reactive so he is being started on a MICRO dose. his first dose is 15C. this is miniscule! (the higher number actually means a smaller dose of the antigen- so confusing i know - medicine is so weird!)

traditionally, a patient only receives LDI injections every 7 weeks (the immune system has a memory and doesn't like to be reminded of an antigen more often than this) however, in sparky's case and because his doctors are actually "undershooting" with this micro dose (meaning it may be too tiny to actually initiate any sort of response), they will incrementally titrate up his LDI doses each week for next 3 weeks - starting at 15C, then 14C then 13C.

if he experiences a bad flare of his symptoms during this time, this titration dosing will be stopped. if he doesn't flare then he will receive all 3 doses over the next 3 weeks and then under go the second stage of dosing 7 weeks after that.

so that is where we are at. today, sparky will start this new cutting edge therapy. 

the objective of the LDI therapy is to treat the auto-immune aspect of sparky's illness - to modulate the immune and inflammatory responses his body has in response to the bacterial infections he has. while he under goes this therapy he will be closely monitored by DR D, his seattle lyme doctor. additionally, he will remain on aggressive antibiotic treatment under the care of DR H (his primary LLMD in SF) as his elevated WBC and markers for strep, lyme, babs, and bartonella continue to indicate active infections. DR H and DR D have partnered together many times before in order to provide sparky with excellent medical care. we are very grateful for both of them.

please keep our boy in your prayers. 

onward and upward towards healing.
there is always hope.