My fight for IVIG: A list of my infections

Here is a partial list of the infections I’ve had over the years…I guess you could say this is the gory details of my medical case laid out right here–right before your vary eyes!

(‘Partial’ because I’m just rattling off my infections in the middle of the night–I’m sure in forgetting one or two along the way–)

Attached below is an email I wrote tonight to my home base immunologist here in Los Angeles, whose heading up my fight for IVIG.

While this list is exhausting to look at, I know it’s not everything…and it’s definitely not everything I’ve been through medically over the last few years, though this list definitely gives a good taste of what I’ve been through–

Any thoughts or opinions are greatly appreciated, of course. I’m willing to hear an idea from anyone–free feel to email any thoughts to me directly to teddyleigh.

(And yes, if it’s natural, I’ve tried it. It’s not that I’m putting down exercise, eating right, sauna therapy, colloidal silver, sleep schedules, Cod liver oil, acupuncture, massage therapy, various herbs and teas, it’s just that my problem is way more serious than that. All those things help, of course (and I alternate through many things on this list),

it’s just that I have an innate immune deficiency that I need help solving. Grandma didn’t make a soup for this one : )

Thankfully, until we have the answer, IVIG will definitely continue to help keep me alive…IVIG has already saved my life a few times in my past–

And as an added bonus, IVIG will cut down on my need for hospitalizations too, so it’ll end up being much cheaper for the insurance companies as well. Once I get it approved, everyone will win! : )

And I’ll be bothering my doctors less!

And I’ll be able to spend more time as a productive citizen!

And I’ll be screaming out in pain less off!

IVIG for Teddy!

🙂

Begin forwarded message:

From: Teddy
Date: January 31, 2012 12:50:16 AM PST
To: Dr. K
Cc: Dr. S
Subject: Putting together a list of all of my infections

Dr. K,

I received a call from Dr. D about putting together a list of all of my infections for my fight for IVIG–I know it’s difficult (impossible?) for any one doctor to do it, because I’ve been seen so many doctors over the years…it’s probably going to be most accurate coming from me–and even then, it’s probably going to take me a little while to remember them…let alone track down all of these records 🙂

But here’s a rough list–as I can think of them in the middle of the night:

* Lyme/Bartonella infection I’ve been struggling with. I’ll get those test results from Dr. H. (My Bartonella result in particular was ‘through the roof’. I really got hurt by how sick most doctors let me get before treatment started–I have video tape somewhere of the uncontrollable twitch I had on the right side of my mouth, that went away with antibiotic therapy. It was really bad.)

* yeast. I’ve had so many problems with yeast, it’s an ongoing headache in my life. I’m not even sure how to separate the number of fungal infections I’ve had over the years, including an ugly one on my arm once. It’s really hard to say where one yeast infection stops and another begins…let’s just say I get two fungal infections a month for the last 7 years. I’m sure I can put together some dates (and fungal infections go back to my childhood as well).

* numerous HPV infections. I can’t even count how many times my cervix has been poked/frozen/cut over the last few years. I’ve an entire stack of medical records to go through on this infection alone.

* skin infections. Like my fungal infections, there are too many of these ones to count, as I often just put bactorban on them when they spring up–I will do my best to go through past records. I have a few photos too, including a great one from last Aug 2011, when I had that horrible post op infection from my port surgery–it was a horrible skin infection. And like most of the others, no fever and no elevated wcb. It was a *really* ugly skin infection too…

* H-Pylori Infection. I think I blood tested positive sometime in 2010? I’ll have to check these records as well.

* UTI. My brief stint at County in the Spring of 2011, I was diagnosed with a urinary track infection. (in one of my many failed attempts to run away from Cedars…like Dorothy, ever so often I need to be reminded there’s no place like home. : ) I also have lots of other UTIs in my past as well, like in my 20s and even before.

* First MRSA in my nose (Spring 2006), then VSRA in my nose (spring 2011), and VRE in the stool (Dec 2011)

* Bacteremia, November 2005 (Corney Bacterium and Entercoccus).

* C-Diff, around the same time.

Then my history of sinus infections, bronchitis, puemonia in the past. Given the amount of antibiotics I’m on now, it’s not surprising I haven’t had these specific infections over the last few years. I did have a CT scan (2006?) show a scar from a previous pneumonia.

In general though, infections can be traced back all the way to when I was born. The first documented strange infection is the German measles I had one week after I received the vaccine, when I was 1 years old…Dr. Borish told me that was the first sign of my immune deficiency.

And these are just the infections off of the top of my head, in the middle of the night…

(Do polyps and inflammation found from surgeries count as well? I’ve had polyps in my uterus, gallbladder and my colon, and inflammation of my tonsils, appendix and gallbladder (which have all been removed. Plus my infamous lesions in my brain MRI, which my most recent CT after six months of IV vanco has now shown are gone…)

I’m sure I’ll think of more over the next few days 🙂

Thanks again for everything. You’re helping save my life 🙂

Warmly,
Teddy

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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