It has become obvious that this little site is becoming a connecting point for others who are either battling Lyme themselves, or suspect that either they or a family member may have Lyme disease. And humor me while I add a necessary disclaimer – I am by no means an expert, mostly because of my zero medical degrees. This is simply my story, and because it’s a rare and twisty account, I have found that baring my soul to the masses bears the fruit of making connections with others who are going through similar things, and we are always better when we learn from one another. So if doing a search for “Lyme” or “Interstitial Cystitis” brought you here, welcome, and I’m sorry you had to google it in the first place. But it works well for me, because last month I rejoined my blogging community to help raise awareness for CVID, the immunodeficiency that kind of kicked off this domino effect of illness and autoimmune issues. (April was CVID awareness month, which flows perfectly into May – which happens to be Lyme disease awareness month.)
Because it has been awhile, a brief (HA!) refresher: My backstory is important, because we are learning that any one of the issues I have can cause a cascade of other issues. This all started because I have a rare immune deficiency that is called, oddly enough, Common Variable Immune Deficiency. Last January I was also diagnosed with Primary Biliary Cirrhosis/Cholangitis (PBC) an even more rare autoimmune liver disease, and then, as luck would have it, last May I found out that I also have Nodular Regenerative Hyperplasia, a second liver disease…..which, turns out, was caused by….frigging LYME.
The CVID was triggered by an e-coli infection that I contracted 6 years ago. It’s kind of a “chicken or the egg” type of thing because we don’t know if the CVID caused me to be at risk for the PBC, or if the E-coli caused my liver to declare war on itself. And it really makes no difference, except that other warriors who have any one of these conditions need to understand their risk factors for co-morbid (a really morbid way of saying co-existing”) conditions.
“Liver Disease number 2” – the Nodular Regenerative – Hyperplasia(NRH) was caused by chronic infections, and the chronic need for medication. The infections and the medications lead to bile duct injury, which causes Portal Hypertension very bad things. People with CVID tend to have lots (and lots and lots) of infections. In my case, I was having constant UTI’s requiring constant antibiotic treatment and pain management support. And no one could figure out why I got a UTI every time I stopped taking antibiotics. (There she goes talking about tinkle again.) We were warned by my team at NIH that unless we found the root cause of these chronic infections, and STOPPED THEM, the NRH would progress. (BTW – “Liver Disease Number 1” (the PBC) is actually behaving right now, responding to the Ursodiol and milk thistle that I take every day, and my liver numbers are finally in the normal range. Go, PBC Awareteam!)
I began an exhaustive search for an expert on chronic UTI’s and Interstitial Cystitis, and as luck (or providence) would have it, I came across a practitioner in DC who originally opened her practice to treat women for Interstitial Cystitis, which is the term for bladder pain caused by unknown pathogens. And after years of practice, she began to realize that the common denominator, the root cause of Interstitial Cystitis, is Lyme Disease. 98 % of her patients have Lyme Disease. At first I had a very hard time believing that I could have Lyme Disease in addition to everything else. But think about it- I have virtually no immune system. I was the perfect hostess for this intruder.
Before this, I knew that Lyme was a very, very bad thing, and that was the extent of my knowledge. So here begins my attempt to break down this complicated illness and explain it in a way that at least I can understand…because so many of us think, “Tick bite, rash, antibiotics, good to go.”
This is getting really long. Shall I break this into two parts? But before I get into my Lyme lesson…let me just add my 2 cents.
We need to lobby for a name change. It should really be called Lyme DiseasES. I don’t have Lyme Disease. I have Lyme DISEASES. Ticks aren’t hit men who bite you once and move on. They prefer slow torture, and specialize in working undercover for years – and I mean, literally UNDERCOVER because they form protective shields called biofilms – like Harry Potter’s invisibility cloak, allowing them to remain undercover and very dangerous, and move about wreaking havoc under their cloak of invisibility biofilms.
But I digress. Let’s stop for today…it’s important to know the backstory of my Lyme disease, because one diagnosis led to another, which is an important reminder to stay vigilant without becoming obsessive. (Good luck with that.)
Tune in next for an exciting chapter on “What ticks feed on during their larval stages to contract so many diseases.” It will either inform you, or help you reach your weight watcher point goals.
So Much Love,