April 21, 2015

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.








8 comments:

Anonymous said...

Thinking of Sparky as he embarks on this new treatment and sending healing vibes to you and your family. xxxx

Eileen said...

So moved by your story - you are one brave family and I believe you're going to win this battle.

It's great you're trying LDI it's really helped one of my daughters - I have 3 with Lyme! You may be interested in joining the Facebook group LDI for Lyme.

Best wishes, Eileen


Anonymous said...

Hi there! I found your blog while researching LDI for Lyme b/c my ND suggested it for my little boy. I was wondering how things were going with it? Take care.

Anonymous said...

Thank you for sharing this valuable info. This new treatment of LDI for chronic Lyme sounds promising. My one area of confusion is that there is a lot of conflicting info on whether one should remain on antibiotics/antimicrobials once LDI starts. Will it not just continue to cause flares from die-off of the spirochetes being killed by the antibiotics. I've read articles stating that one must STOP all antibiotics/antimicrobials once they start LDI. Would love to see more info/clarification of this for those of us soon to start LDI. All the best to you and please keep us updated as to how it's going/how effective it is. My understanding is that generally one does not stabilize on it till aprox. Month 6.

BRIAN HOLCOMB said...

Hope all is well How about a LDA update. it's been several mos

Anonymous said...

Is it the Lyme organisms and/or the toxins they produce that causes the tissue and organ damage in Lyme, or is it JUST the inflammatory immune reaction? If it's something other than inflammation, how will LDA/LDI control the progression of the disease?

Anonymous said...

Is it the Lyme organisms and/or the toxins they produce that causes the tissue and organ damage in Lyme, or is it JUST the inflammatory immune reaction? If it's something other than inflammation, how will LDA/LDI control the progression of the disease?

Molly Appelt said...

Hello- I hope all is going well with LDI treatments. I started mine yesterday and have had a symptom flare/herx. They are starting me on prednisone and once I've recovered I will try a diluted dose. I'm not on antibiotics. I have been off since November 2014. I'm trying this in hopes that I don't need to go back on abx. That an autoimmune response is why I am taking longer to recover than we thought it would. I would love to hear about your progress. God Bless :)