Hope For Healing: IVIG and Chronic Lyme Disease

 IVIG

While I have talked a lot about my diet on the PK Protocol for chronic Lyme Disease, what it consists of as a whole in parts 1 and 2, the phenylbutryate aspect of the IV’s, this treatment is really only one of many tools and aspects of my healing journey.  One of the first, and very important treatments that I did for the beginning year and a half after hitting my “brick wall” was called IVIG.  While the scientific evidence supporting IVIG and all that it is potentially useful for is still not completely known, this article simply serves as a testimony from my own, personal experiences. 

My Background 

Rewind to the summer of 2011, when my body finally collapsed under the years of untreated Lyme.  In the span of one day, all previous, seemingly insignificant GI, joint, muscle, head, skin, and circulation symptoms came crashing in, leaving me unable to sit or stand without passing out, in an extreme brain fog, no strength in both muscles and bones, worsened gastrointestinal issues, and a variety of other conditions that spiraled downward very quickly in the months proceeding.  Many people ask what the first thing they should do when suspecting chronic Lyme.  Though the wide range of resources (or lack there of), can be somewhat overwhelming and thus make it hard to move forward in pursuing a diagnosis, my parents had a close family friend whose daughter had gone through similar trials in her health due to Lyme.  Therefore, we were directed almost instantly to get a blood panel done through our naturopath, as well as book an appointment with a Lyme literate neurologist, as there was truly no reason to waste time with general practitioners, conventional medical doctors, and their denial of what my body was experiencing.  Fast forward about six months, and I was waste deep in various tests that my Lyme literate neurologist was using to rule out and verify the fact that it was, in fact, the effects of chronic Lyme in my body that was causing all of the suspected damage.  Ultimately, through all of the blood panels that he created specifically to test for hidden Lyme, as well as the variety of extensive procedures such as a spinal tap and those to see the functioning of my small nerves, the verdict was officially clear – Due to the previous years that Borrelia Burgdorferi had been left untreated, and thus unrestrained in my body, it was left to reign supreme throughout all of my internal organs, systems, and everything in between.  Ultimately, the Lyme testing that he did come back positive with Lyme, of which he termed “late stage neurological Lyme disease,” due to how faint and inactive it was.  In a way, this proved how long it had really been in my body, and while I have never been one to dwell on diagnosis, this was very important in my overall journey back to health.  Instead of being an acute infection, the Lyme had unknowingly wrecked its havoc during the previous years that I experienced those “minor” symptoms that rotated in and out every other month.  While I still struggle with the Lyme infection rearing its ugly head every now and then, my neurologist did not see IV antibiotics to be very helpful.  Instead, he chose to treat what he had proven to be true, and that was that Borrelia Burgdorferi had severely damaged small nerves throughout my body.  This could, and still can, explain many of the symptoms and conditions that I experience and (or) have/had developed throughout the years.  Aside from the neuropathy it caused through my legs, arms, extremities, different parts of my back and neck, the damage also affected my orthostatic hypertension.  In other words, my blood pressure is non-existant, kidneys do not retain water properly, nor does my thyroid work correctly (causing both hypo and hyper-thyroid, as well as a  pituitary gland ), poor circulation flow, and the most obvious, serious neurological decline, and a paralyzed GI tract. 

My Experiences 

If you are familiar with the human body, you will know that healing, and thus repairing a damaged nerve is not an easy task.  Truly, there is not a clear answer as to if full recovery is even completely possible, and if anything, takes many, many years to get full function back.  Therefore, to address these issues, my Lyme literate neurologist began me on an IV treatment known as IVIG.  To put it simply, the IV’s consisted of purified blood plasma, of which was used to help support, and thus restore my nerves in a way that my body otherwise could not do at its own due to the degree of damage that had already taken place.  The IV’s came once a week, and took about 5-6 hours.  The drip had to go very slow, as adverse side effects were common, and I personally would experience screaming migraines and increased lethargy afterwards.  My white blood cell count would also dip very low, therefore causing the infusions to be taken treatment by treatment, as if they did not return to the normal range, I could not receive my IV.  According to Amiram Katz, the doctor who administered my IV’s,  IVIG “may be the only safe immune-modulating treatment in the presence of infection,” and though it “has worked with 5,000 patients with Lyme disease,” it is typically “given for complications of Lyme and not for Lyme itself.”  Much like most all treatments for chronic Lyme, one undoubtedly feels worse before they begin to see any improvement. Moving one step forward and two steps back is the name of the game, and I truly cannot say I ever felt “good” when getting IVIG.  Overall, I did the treatments for 2, six month intervals, with a nurse coming to the house to administer my IV’s once a week.   I cannot say when, exactly, things began to turn around, but the most obvious came in the form of neurological improvement.  Though still in a brain fog and very sensitive to noise, anything fast paced, light, and tasks such as reading, I was able to return back to continuing school where I had left off at home (I was always home schooled).  Slowly but surely, one class at the time, I was able to catch up and complete high school.  Of course, this didn’t happen overnight, but I am proud to say that I did the unthinkable and graduated on time, despite missing over a year of school.  Through time, the neuropathy throughout my body also improved, simultaneously bringing back my blood pressure to a number that people and machines could actually read.  Though very low, and still supported by a medication (1/2 of a pill I am proud to say), I could finally go from laying to sitting, and sitting to standing without blacking out and dropping to the floor. These improvement have been huge in my overall healing, and truly I wouldn’t be where I was without IVIG.  I can say in all certainty that the 1+ year that I struggled through those IV’s was very well worth it, and I am sure they have helped me in more ways that I even realize.

Aside from my neurological issues, it truly is the nerve damage in my intestines that has led to and (or) contributed to many of the other complications that I experience from chronic Lyme.  To be frank, my intestines don’t work, or as my neurologist put it, I have “bell’s palsy of the gut.”  Nothing moves through correctly, and while the IVIG treatments have definitely helped in restoring some of my mobility in the long run, there are still many missing pieces to the puzzle. Of course, there are many other factors that play into the state of my intestines, whether it be additional infections and various other factors I have encountered that have had serious trauma on my overall immune system.  Somedays I wonder if my intestine will ever work properly, or if this is simply something that I will have to deal with forever.  That being said, I remain persistent in healing my gut, especially by using food as medicine through the PK Protocol, and the autoimmune protocol as outline by Dr. Sarah Ballantyne.  I also know that whatever the outcome may be, God will help me continue to  overcome the obstacles that I  face.  Aside from helping restore my neurological damage, it is also believed that receiving the IVIG treatments as one my first, major steps of action, allowed me to avoid the development of any other autoimmune diseases such as Hashimoto’s, which is very common with those dealing with chronic Lyme. Though everyone’s bodies are different, thus making the effects of untreated, chronic Lyme Disease different, it is said that spirochetes target one of two place in the body, the gut or the brain, of which I have seen IVIG to help both in my body.  While there is not much information out on the web concerning IVIG treatments, I have included two posts below for additional information. 

Further Reading

Dr. Katz and IVIG

IVIG Therapy

 

 

 

 

 

Psalms 119:49-50 “Remember your word to your servant in which you have made me hope. This is my comfort in my affliction, that your promise gives me life.”