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.

THE ANTICS OF MY LYMPHATICS

for your Friday nite viewing pleasure:

swollen, puffy eyes...

believe it or not, this pic was taken 4 hours AFTER waking!

eek! isn't that a lovely site to encounter unaware.

during one of my in office visits with DR H, he diagnosed me with lymphedema. as a result he prescribed lymph massage and deemed it very necessary and needed in order to assist my body in effectively detoxing. i have been going for lymphatic massage since October. at the time he prescribed it, i knew nothing about lymph massage or the lymph system in general. my understanding of the lymph system was limited to knowing that we have lymph nodes and that they assist in fighting infection.

i have since learned a lot about the lymph system. it is really quite fascinating. the lymph system plays a very important role in detoxifying our bodies and maintaining good health. furthermore, having a healthy lymph system is absolutely vital to strengthening your immune system. the more i've learned about the significance of the lymph system, the more i've wondered why the poor little lymph system seems to be largely ignored or neglected by health care professionals.

the following is a quick summary of the lymphatic system:

"Lymphedema is characterized by edema and blockage of the lymphatic system.

The lymphatics have three very important functions, according to Dr. Gerald M. Lemole, Chief of the Department of Thoratic and Cardiovascular Surgery, Deborah Heart and Lung Center, Browns Mills, New Jersey:

"First of all, the lymphatics return protein to the bloodstream. As much as 50 percent of our serum protein can leak out of our bloodstream during a 24-hour period, and it is the job of lymphatics to return this protein to the blood. Second, the lymphatics clear the spaces between our cells and carry away toxins and foreign particles such as bacteria, large proteins, cholesterol, and viruses. We were taught that the liver and kidneys clear away toxins, but it is actually the lymphatics that clear away the fluid that bathes each cell of our body. Third, the lymphatics are an integral part of our immune system. The white cells, called lymphocytes, circulate in and out of the lymphatics and help destroy foreign particles like bacteria, viruses and parasites." (http://www.uhealth.net/article3.htm)

DR H refers to me as a cesspool of neurotoxins. my cesspool status means that my lymph system is very clogged and is stagnant. as a result i have developed fibrosis in my abdomen. "Fibrosis is the formation of fine scar like structures within tissues affected by lymphedema. the fibrosis create obstructions and make lymph drainage even more difficult." you can learn more about the lymphatic system and fibrosis here: http://www.lymphnotes.com/cat.php/id/8/

in the last couple of weeks, i've had to slow down on going for my lymph massages. with the inclusion of the million dollar drug alinia to my treatment protocal we just can't afford to keep up pace with a lot of my therapies that are 'out of pocket' expenses. this includes my lymph massage therapy. i'm still going but have had to cut back on the frequency with which was deemed necessary.

as a result my bod is rebelling.

i am astronomically swelling.
sometimes to the tune of 10lbs in one day.
my lymph therapist has me weighing myself at regular intervals during the day in order to keep track of how severe my lymphedema is.

on average i am 'gaining' about 8lbs daily.
my record is 10lbs in less than 12 hours.

there is no rhyme or reason to my swelling other than that it is evidence that i have an active, ongoing infection and a diseased and poorly functioning lymph system.

and my dough boy, michelin man bloated status is very different and not to be confused with PMS.
Oh no, no, this is very different.

sometimes i gain weight overnight - i am heavier and puffier in the morning than i was the night before. and vice versa. and even weirder than that is that the swelling moves around my body. all 8 to 10lbs of it. oh yes, it is not 8lbs of fluid evenly dispersed over my body, it tends to be 8lbs of fluid all in ONE area and then it all migrates to another area - sometimes within hours. sometimes over several days.

it is one hek of a strange phenomenam.
and definately grossly uncomfortable.
and annoying. and irritating. and frustrating.

and it bugs me that it bugs me.

really. in the big scheme of things, who cares?
considering all that i face in this fight, why am i bugged by my puffy face?
considering the burdens my loved ones shoulder, why am i perturbed that my shoulders make me look like a quarterback?
considering all the pain and heartache in this world, and i've got the nerve to belly ache about my swollen abdomen?

i mean who cares if my face is puffed up - at least the puffiness actually helps to fill in fine lines; or who cares that i'm living in stretch pants because my butt and my legs are so swollen - at least the merger between my butt and thighs makes my legs look longer; or who cares if my shoulders are so puffy that i look like i'm wearing those gargantuan shoulder pads from the 1980s - i think i recently heard that 80s fashion is making a comeback;

or who cares if i get "the muffin top" on the days i try to squeeze into my jeans - i should just be grateful on those days that i'm well enough to at least attempt to wear jeans. (and did you know the muffin top look can also be attained by stuffing fat feet into ballet flats?) or who cares if my neck is so puffy that i look like a rodent hoarding food in its pouches - at least Walter (our family hamster) feels like he is living with his own kind;

"my hamster pouches"

or who cares if my head is so fat that none of my baseball caps fit anymore - after all, i don't need to hide my greasy hair, in my condition, i wouldn't dream of leaving the house for fear of scaring small children.

and speaking of children...
who cares if i look like i'm 5 months pregnant...the upside to that? well, i learned that another lymie friend of mine is dealing with the whole bloated belly, faux pregnant look too!

it is always such a comfort to learn that you are not alone.

and the icing on the cake?
my puffy, bloated lyme friend is a MAN!
oh, yes, oh yes! my buddy Peter thinks he looks pregnant too!
and its really bugging him too!

if you ask me it was pretty ironic to talk to a man about swelling and bloating - and super satisfying to have him moaning and groaning about it right along with me.

so i guess i can conclude that there is an upside to everything...even the antics of my lymphatics.