ONE STEP AT A TIME

i'm wearing my thrifted polka dot shoes today. aren't they spiffy?

they make me smile and they remind me to just take this journey one step at a time. as it turns out, they are also a super snazzy way to jazz up a hospital-issued wardrobe.

so here's the thing - i'm sitting in the hospital awaiting a CT Scan right now. for me. i've been struggling with some pretty debilitating symptoms since mid-january. primarily, intense pain and pressure in my spine, vertigo, nausea & increased vomiting (as in i'm vomiting more than the nightly vomiting episodes that have plagued me for 3 years now)

aside from the vomiting, the rest are all new symptoms for me.

we haven't talked much about my struggles the past 4 months for several reasons...


...for the first few weeks we just thought i had a really bad flu. which at first made sense - after all, my symptoms were "new to me" and came on suddenly. on a wednesday morning in mid-jan, i was woken out of sleep by intense nausea and back pain, within hours i was vomiting. however, as january ebbed into february, the pain & pressure in my spine increased and i became so off-balance that i had difficulty walking. as a result, i was unable to get out of bed for most of february. as my functionality began to diminish, the hope that this was nothing more than the flu faded away.

...and then it all just felt too surreal & too unbelievable to consider that sparky and i could possibly be in relapse within a week of each other. (my symptoms began the week before he fell ill again.) 

...because coping with sparky's relapse took all our emotional sharing quota - there is only so much you can publicly bleed about at one time.

...because there have been more questions than answers and everything has been about as clear as mud.


in march, i was seen by a local doctor who suspected that my spinal pain & pressure was infection related. (i also had elevated WBC) he prescribed antibiotics. within 72 hours of starting the antibiotics, my symptoms intensified so greatly that all i could do was lie on the bathroom floor and puke and cry. the hubster put in an emergency call to our LLMD, DR H. with sinking hopes, we suspected that the sharp increase in symptoms was most likely a herx...an indication that my symptoms were most likely lyme-related. 

however, DR H was concerned that my symptoms were also strongly indicative of another condition. (lyme often mimics other conditions) my doctor here agreed and they both felt this warranted further investigation and felt it was necessary for me to undergo several tests to rule out the condition my new symptoms are indicative of.

so that is where i'm at...in probable relapse alongside my son. today's scan will either confirm my relapse or reveal another condition. affirmative results in either direction will be difficult to face. this journey is so difficult to walk...but i'll just keep moving through it one spiffy step at a time. 

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.

ITS A ROLLER COASTER!

a few fridays ago, we made a quick day trip to seattle for sparky to be seen by his LLMD, DR D. (his primary care doctor continues to be DR H in CA - but these two brilliant doctors have often partnered together to provide and co-ordinate medical care for sparky) we are so grateful for the wisdom and expertise of both these doctors.

sparky is starting another new round of antibiotic treatment - this will target Lyme, Babesia, Bartonella and Strep - which are all infections he is continuing to test positive for. additionally, his WBC (white blood cell) and lymphocyte counts continue to be highly elevated, so he will be starting a new treatment called LDI Immunotherapy. this therapy has been used to treat autoimmune illnesses and allergies for quite some time but only recently has been used to treat Lyme)

(i will write a more detailed post about this therapy once i've had some time for my brain to digest and process all the details and information we learned about it from his doctors)

for now, just trying to give a bit of an update on where things stand with sparky.

life has been a complete roller coaster since he relapsed in mid-january...his symptoms and health are very unpredictable and he has many daily ups and downs. the primary symptoms and issues he continues to struggle with are intense, unremitting joint pain (meaning his pain levels fluctuate but he is never not in pain), cognition issues - mainly brain fog, maintaining focus, and difficulty retaining information, insomnia (non-responsive to sleep pills), fatigue, and nausea.

oh and he's been sneezing and wheezing and itching for the past 2 weeks as the poor kid's hayfever has ramped up... and he can't be on anti-histamines as these are contra-indicated with the LDI immunotherapy he will be starting in the next week or so.

he has had some minor improvements and mild reduction in his pain levels since re-starting aggressive abx treatment at the beginning of march. the really GOOD NEWS is that he is no longer deteriorating! 

we are very, very thankful for this. before getting back on antibiotics, his symptoms were spinning wildly out of control and he was spiraling into some fairly severe levels of disability again. as i wrote about in my blog post, reality of relapse, watching this decent and coping with the accompanying losses was gutting and terribly frightening. once again, we had to watch our son miss out on the many things that most kids his age take for granted - from life experiences like shooting hoops, being in a classroom or just hanging out with friends to more complex tasks like reading or writing and functioning independently.

one major fun life experience that it looked like he would miss out on was a spring break youth trip to several theme parks in sunny cali. he had been planning to go on and greatly anticipating this trip for nearly a year. just before he fell ill in january, he had even convinced a new friend from school to come with him - he was so excited when his buddy registered for the trip.

and then he got sick.

as january bled into late february, and the date for this end of march event loomed on the horizon, he told us that there was no way possible he felt well enough to go.

he was devastated.

with the trip only a mere 4 weeks away, DR H started him on aggressive treatment.

there was much discussion with DR H about whether this trip, however remote the possibility of going on now appeared to be,  should even be a consideration at all. even on the off chance that treatment helped alleviate his most debilitating symptoms, and he felt "well enough" to go on the trip, was it even a a wise choice to still be holding out hope for - especially given how ill he had been the last few months and how fragile his immune system is.

DR H simply said there was no way to know...but he felt that it would be incredibly detrimental to sparky's mental and emotional health for him to miss the trip . so what he could do was set him up on a treatment plan that would give him the best possible chance of physically building up his system enough to get him functional enough to go.

that, my friends, was a tall order stacked against very big odds.

for the next 4 weeks, we literally bathed the boy in prayer, antibiotics, and IV immune boosters.

this powerful combination worked and i am so delighted to say that our boy was able to go! 

it was a huge answer to prayer and no small feat - but since dad was the one running the event and was also going on the trip, he was able to go. he was heavily medicated and in tremendous pain the entire time but he went and really had a blast. 

that's our boy on the log ride at knott's berry farm

it was a tremendous spirit lifter.

since his return from the spring break trip, he has been able to attend school about 2 - 3 times per week. some weeks he has managed full days and others have been half days.

his pain, lack of sleep and cognitive challenges make school and academics very challenging and both physically and mentally draining. however, these small steps are indication that he is responding to treatment as he had not been well enough to attend school at all since mid-january.

with the advent of starting this new LDI treatment (beginning the week of april 20), things could get rougher for him over the next couple weeks, (this treatment can cause temporary but intense flares of symptoms). we would appreciate your continued prayers. also, if you know sparky and could drop him a line of encouragement, that would be spectacular - he needs that!