Read Part One

Along with the interstitial cystitis, inappropriate sinus tachycardia and supposed IBS (I never believed that one), I started having problems with my knee out of the blue and went to physical therapy for several months as well as received shots in my knee. My knee has just recently started bothering me again – is it an old “injury” (that I don’t remember receiving) or has it been Lyme all along?

I also developed diverticulitis in late 2011. Now, no offense, but this is typically a disease that older people get. As in over 60 older people. I was 35 at the time. But it was diagnosed and I was basically on a liquid diet and another round of antibiotics. And once again, they couldn’t tell me why this developed as I didn’t seem to have any other risk factors for it. I often joked with my doctors that I was going to donate my body to science because I have so many ailments that none of them could explain.

Also, during my pregnancy, I developed reddening and thickening of the breast skin on both sides. After multiple rounds of antibiotics, my doctors told me they suspected inflammatory breast cancer. This is an aggressive form of breast cancer that without treatment has a life expectancy of six months. That date just so happened to coincide with my due date (from the time symptoms started).

Luckily, that turned out not to be the case but it was about three months from the time it all started before I found that out. And no one was ever able to explain why I had all of the symptoms of a rare and incredibly aggressive form of breast cancer.

As I said earlier, my biggest fear in all of this is the possibility that I’ve had this for a long time and could have passed it to my son during the pregnancy. Along with my medical history that largely can’t be explained by doctors, I was also given a round of steroids in June 2012 just prior to when all of my symptoms started.

Now, steroids have been proven to be very bad for Lyme. It can “activate”, for lack of a better word, an otherwise dormant infection (or one that the immune system is keeping in check) and can spiral an active infection out of control. So did I just happen to be bitten around the same time as I received the steroids or did the steroids stir everything up again? Once again, it’s a question I’ll never have an answer to.

But the biggest question was did I have this while I was pregnant? Could all of my past medical history be explained by that tick bite in the summer of 2000? Interstitial cystitis, knee problems, fevers, unexplained fatigue and general lethargy, heart problems – all of these could be related to Lyme. Or could it just be that I’m unlucky with health problems? It’s the question that can’t be answered. But the question I HAD to know was about my son.

Within a few days after getting my diagnosis of Lyme, I was on the phone with my son’s pediatrician, scared to death. I told her what happened and asked what the possibility was that I had infected my son during pregnancy. She stated it wasn’t possible and she hoped my doctor had told me about all the false positives for Lyme tests (there’s actually a much better chance of a false negative!). I asked about testing him and she said there was no need because he hasn’t had any symptoms. She said we would keep an eye on him and if he ever started developing symptoms, we would test then. So I dropped the case with her.

Until a few days ago, despite my research, I never had any other answer. But each time my son would have a fever or say something hurt, the voice in the back of my head was saying “You gave him Lyme”. And it would devastate me. It’s bad enough to think how I have affected our lives just with everyone having to deal with me having the disease. But the thought that I could have given it to our child was just too much.

So a few days ago, I did my first webinar with a Lyme doctor – this is the same webinar I referenced here. Anyone who attends can ask questions and he answers them. One person asked about the possibility of passing it during pregnancy to the fetus.

He answered that there is a 50/50 chance that it could happen. If the mother knows she is infected, she should be on antibiotics during the pregnancy and if she is, the risk drops to less than 1%. A known infected mother should insist that the cord blood is tested after birth. This can give an idea of if it was passed. After that, it’s a game of waiting to see if symptoms are exhibited. Because there is no test to see when Lyme is gone, he said he doesn’t believe in treating unless symptoms are present. If there are no symptoms present, even with a positive test, he doesn’t treat because there’s no way to know when to end treatment since that should be symptom based.

He said kids who have Lyme tend to be colicky after birth. But of course this happens with lots of babies who don’t have Lyme. Other indicators can be behavioral problems outside of the “normal” behavior of a child. And one of the biggest indicators can be fatigue and where the child just doesn’t show interest in anything other kids are doing and can’t seem to keep up with other kids his own age.

Thankfully, none of this describes my son. He currently runs circles around us and operates on much less sleep than we do (me or my husband). Hopefully, it continues to be that way in the future and I really didn’t pass this along to him.

And while the time during the uncertain cancer diagnosis was one of the scariest of my life, it may just turn out that it was a blessing in disguise because I was on antibiotics for such a large part of my pregnancy.

While I may never know when I was actually infected with this disease, it does give me some peace of mind to know that if I was infected while pregnant, the antibiotics could have potentially helped to spare my son.

Only time will tell.

This post is going to be in two parts because you first have to understand my past medical history to know why this would even be a concern. Part Two Here.

One of my greatest fears since being diagnosed is the possibility that I have actually had this for a long time and could have passed it along to my son during pregnancy. It absolutely terrifies me at the thought of it. While mainstream medicine doesn’t recognize the fact that it can be transmitted to the fetus or through sexual intercourse, there are some case studies that suggest it. Cord blood from an infected mother has tested positive for Lyme.

As best as I can pinpoint, I was bitten by a tick in the summer of 2000. We were at the lake with friends and when I was taking a shower, I felt something on my back. I screamed for my husband and he came running in. He said it was a tick and he removed it. I don’t remember how or if he did it properly, I just know he removed it that day. That is the only time I ever remember having a tick attached. I’ve seen ticks on me since then but never attached.

I never even thought about that tick bite again until the word “Lyme” started being thrown around in 2012. But shortly after that tick bite happened, I started having a lot of medical issues and what I thought at the time were UTIs. Lots of them. Like every other month I would have one. In 2002, I had my first kidney stone and had lithotripsy to break it up. In 2003, I had to see a cardiologist and was put on beta blockers. My heart rate would suddenly increase with no warning and for no reason. I presented in the ER with a heart rate of 183 sitting still. I didn’t even know my heart rate was up – I just knew I felt horrible. I was diagnosed with inappropriate sinus tachycardia, which basically meant I have tachycardia and we don’t know why.

I was also having other issues at the time with no explanation. I would have fevers for no reason and was having a lot of stomach issues. After a colonoscopy, I was diagnosed with IBS and the doctor told me he thought everything going on was stress related. In 2004, I was hospitalized for a kidney infection.

During this time, I had many, many tests done for the recurrent UTIs but no doctor could figure it out. I had urinalysis in the doctor’s office every time I went, I’ve done more 24 hour urine collections than I can count, CT scans, IVPs, blood tests galore and a few tests that I could describe to you but I have no idea what they were called now. The perplexing issue was that I didn’t have typical UTI symptoms. I rarely had the burning sensation that accompanies a urinary tract infection in almost all cases. I would have urgency and pain. But the pain wasn’t in urinating, it was like unending menstrual cramp type pain. My back would hurt too (leading them to believe it was related to my kidneys) and I would sometimes get a fever. Generally, when it happened, I would feel really badly and just want to curl up in bed.

I remember saying multiple times in the doctor’s office – I don’t get normal UTI symptoms but I know what it feels like and my urine test (the dip test in the office) always comes back showing something when I feel like this. During this time, I was treated with multiple antibiotics, most often it was Bactrim (which I eventually had an allergic reaction to), Cipro and Levaquin. At one point, I was told to take either Cipro or Levaquin each time I had sex because we figured out that I usually didn’t have symptoms (or they were lessened) when my husband was deployed. I basically had an open ended prescription for Pyridium and my Levaquin and Cipro prescriptions were written with 6-12 monthly refills of daily doses.

Many years later as I was going over all of my records from the past, I noticed that my urine tests that were done in the doctors’ offices were rarely actually positive. In most cases, they only showed blood (microscopic) and protein but no white blood cells (leukocytes) which would signal infection. When they would actually send it off for a culture (usually after I went back again because the “infection” wasn’t gone after a round of antibiotics), they would call me and tell me the culture was negative and quit taking the medication. But I would still be having symptoms.

This went on for years. Literally – YEARS. At one point, I was told that I may have IgA Nephropathy, which is a disorder of the kidneys but the only way to confirm it was with a biopsy of the kidneys and there was no real treatment. So I declined confirmation.

While I was pregnant, I had a supposed UTI a few times but otherwise, it was pretty uneventful on that front. I still had to do multiple 24 hour urine collections because we were operating under the assumption I had IgA Nephropathy so they were monitoring my protein levels and kidney function. For 18 months after the pregnancy, I had no issues at all. My doctors said that in some cases, the pregnancy with all of the changes in your body can sometimes “right” other conditions, or at least put them into remission.

In early 2011, the symptoms started again with a vengeance. I went back to the doctor and he sent me home with antibiotics and sent my urine off for a culture. Negative again but the urine test at the office showed blood and protein. At this point, he referred me to a new specialist. This urologist said he thought interstitial cystitis was a possibility. I can’t for the life of me now remember what happened but I know he made me mad during the appointment so I decided to find someone else to treat me.

After some searching online, I found someone who has a practice which is basically solely treating IC patients. So I made the appointment with him and figured if anyone could find out if this was it, it would be him. I gave him my history and he agreed that it sounded like IC (which I had never heard of until the previous urologist and at this point, I had seen more than 10 doctors over a 10 year period about this).

He said the test was fairly simple. Using a catheter, they insert two solutions into the bladder. One solution, you won’t have any reaction to at all. The other, IF you have interstitial cystitis, can cause a whole host of symptoms. But people who don’t have IC won’t be able to tell the difference between the two solutions.

He inserted the first and I laid there on the table talking to my husband like no big deal. I didn’t know which solution he had inserted so I had no idea if this was the one I should be reacting to if I had IC. Then he drained that one and inserted the next one. Within a minute or so, I began to get very uncomfortable. The sense of urgency was overwhelming and I was just ready to get it back out of me.

So I was obviously positive and I was diagnosed in April 2011 with interstitial cystitis. Over the next few months, I learned how to do rescue treatments by inserting catheters at home and tried multiple medications (none of which my body liked – one caused rectal bleeding!). The biggest thing was changing my diet. I was no longer allowed to have any acidic or spicy foods. Once I started to pay attention to foods, I began to be able to pinpoint things that would cause me issues – even things like certain preservatives and nitrates. There was quite a bit of time where I only had white rice and boiled chicken because it seemed like everything else irritated me. Over time, I eventually figured out what I could have and what I couldn’t.

As I learned more about IC, I found out that the inside of your bladder basically looks like someone took an ice pick to it and you have nerves exposed. If you eat acidic or spicy foods, the nerves get irritated and cause all of the symptoms (I’m way oversimplifying but that’s the gist of it). So nearly every time I thought I had a UTI, it was most likely that I had eaten something that irritated my bladder, which is also why the symptoms didn’t resolve with antibiotics.

I also figured out that the reason I didn’t have symptoms when my husband was deployed was because I typically lived off of bland foods while he was gone. I would eat cereal or sandwiches or mashed potatoes. I know – really healthy, right?! But I’m not a cook and none of these types of foods would irritate my bladder.

So what does all of this have to do with Lyme? Well, for one, as I was going through all of the different things that can be associated with Lyme, interstitial cystitis was on the list. Odd coincidence or ?? Two, I had all of these other unexplained symptoms that started after the tick bite – though I never put any of that together until I got my diagnosis. Could all of those symptoms have been Lyme too? Or maybe even a coinfection? Maybe all of the antibiotics they had me on for the “UTIs” were actually helping with the tick infections?

The doctor has told me there’s no way to tell. They only thing they know is that I had IgM markers on my Lyme test which typically means a recent infection but almost definitely means an active infection. But Lyme antibodies are different than other antibody responses and the IgM don’t necessarily disappear like they do in other infections. So my answer was who knows? And the next question was always – why does it matter since you’re treating it now anyway?

It matters because of my son. Read Part Two