Monday, July 4, 2011

New Lab Results

It's been exactly one month since my last blog entry, and five months since I started Lyme treatment. I've had a rough and stressful month that pulled me away from my blog, but I do intend to resume blogging with more frequency. There's quite a bit to report, but I'll break up my diatribe into shorter entries lest I produce an update so long that no one gets through it.

Last week I had my follow-up Dr.s appt with my Lyme doctor. We reviewed my latest blood test results, taken in June, which weren't very encouraging. But at least they fill in some pieces of the puzzle and point me in the right direction for next steps.

First, it seems that the gamma globulin shots aren't helping me produce enough Natural Killer cells, since after three of these shots, my levels are still low--not just low, but far out of range. 
A healthy person produces more than 100 and up to 360 on the CD57 scale (a test for NK w.b. cells), but my number just came back as 36. NK cells are CRUCIAL to healing, for they are the heart of the immune system's response to any invaders/infections.

So... since the gamma globulin is proving as not effective enough for me, my Dr. has added something called low-dose Naltrexone, a drug that serves as an immune system modulator, which is commonly given to AIDS patients and people with autoimmune diseases. It has many benefits, not limited to boosting NK w.b. cells, but also boosts endorphins and balances the central nervous system. It's very promising, and I've only heard good things about it in the Lyme community. I started it four days ago and only wish I had started it sooner. I have high hopes for what low-dose Naltrexone can do!

Another big piece of the Lyme puzzle is something called VIP. (I had not been previously tested for VIP but I asked my Dr. to test me for it after I learned about it from a Lyme friend.) VIP is a hormone produced by the hypothalamus. The hypothalamus is the big control gland in our body, and among many things, controls and regulates immune and inflammatory responses via the hormone VIP. When a person becomes sick with a biotoxin illness, i.e. Lyme or mold, the ensuing inflammation causes damage to the hypothalamus. When this happens the hypothalamus is no long able to produce enough VIP hormone, resulting in runaway inflammation. This begins an inflammatory cascade that causes many things to occur but not limited to sleep disturbance, chronic pain, gastro-intestinal issues, adrenal dysfunction, and prolonged illness.

A healthy person's VIP hormone levels are between 23 and 64. Mine came back as "less than 10" which means I am way below the healthy minimum (and who knows what <10 really equates, numerically speaking? Zero? One? Four?) I just had this test performed in June so this is brand new, and therefore it's somewhat discouraging knowing that every supplement I've been on for five months to strengthen my adrenals, liver, thyroid, etc., haven't done enough to correct serious imbalances in my body.

So, I need to be treated with the VIP hormone.
 BUT, here's the catch: it's difficult to simply correct low VIP levels with a bio-identical hormone until the cause of the illness (Lyme and co-infections live in my body) are under control. So VIP will have to be the last thing I treat. It makes it doubly complicated that my doctor isn't familiar with VIP, but I've got the help of a few Lymies familiar with VIP, in addition to seeing a new doctor in August who can guide me.

Lastly, I've been diagnosed with KPU (kryptopyrroles in urine) and low ADH (anti-diuretic hormone) which are both opportunistic to chronic Lyme. 
With KPU, we pee out our minerals and our bodies grab ahold of metals in the place of minerals, making us metal toxic. See, a high number of people with Lyme have heavy metal toxicity such as mercury, lead and arsenic. We're exposed to metals from cavity fillings, paint, medications, tap water, seafood, and much more. People with healthy immune systems do not become metal toxic because the healthy body discards excess metals, but people with Lyme and KPU harbor these metals because our bodies are desperate for minerals. These metals need to be addressed in order to heal from chronic Lyme.

Sidenote: Now I know why I've have such an irritable bladder for decades, prone to non-bacterial cystitis, and why getting my urethra dilated in 2007 and numerous subsequent visits to the urologist (where I was the ONLY patient under 70 in the waiting room) did nothing to help.

The KPU protocol is very hard on the body, since it causes metal chelation from places like the brain. Since I leave in about a week for a dual-trip to Phoenix and Dallas, I'm going to hold off on the KPU treatment until I return. At any rate, it's another thing that has to be addressed before I can even begin to treat my VIP hormone imbalance. Isn't the complexity of this riveting? If you've read through this entry and understood the majority of what I wrote, then you're way ahead of the pack (and most doctors). The dynamics, chronology, and dosages of each pill, powder, injection, cream or sublingual drops are rather stubborn and demanding. There's nothing simple about treating Lyme or its many offshoots.

It just occurred to me that it's rather amazing I've been able to marginally function among friends, at jobs, and in society in general after learning just how many things in my body are not functional. Yet it all certainly explains the physical and mental illnesses and imbalances I've always had that made me feel so isolated and, at times, downright miserable, among these friends, jobs and in society in general.


  1. The treatment process does sound complex, but you can do it... no... you will do it, and soon enough you'll be better. The good thing is that you have a grasp of what needs to get done, and you seem very organized about the whole thing.

  2. I actually followed the article, another sign that brain fog is reducing! I have many opportunistic infections (EBV, walking pneumonia, CMV...) but had never heard of the two you talked about. Great info!

  3. Hi,
    Just found your blog. Our daughter has KPU and started the core treatment back in May.

    I worry about metals moving as her ND does not seem experienced in this treatment.

    I wonder if you started treating KPU yet?

    Best of luck