April 20, 2016


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. 

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.

1 comment:

Anonymous said...

Thanks for sharing.

I tried LDI for Lyme and the reactions I had were far worse than the Lyme symptoms. I feel like they actually caused me to have anxiety for months afterwards, where I didn't have it before.

Of all the options out there for treatment, it sounds like one of the more haphazard ones. I'd be terrified to take them again.