Thursday, May 22, 2014

Bartonella, Part 2??

Maybe I should have just titled this post Drowning in Medical Uncertainty Again...because that is the way I am feeling today. I took my youngest son to see our Lyme doctor in NJ for an initial visit and an evaluation for bartonella, a tick-borne infection that is even more common than Lyme disease in some areas (including ours). Now we wait for blood test results (which are inaccurate and very prone to false negatives but might provide more information). The last thing I want is for another one of us to have to deal with tick-borne illness, but we wanted to get him evaluated and not wait too long like we did with our older son.

A little background, so you can understand...

Our 16-year old son is actually very healthy, in spite of a long list of diagnoses:
  • Chronic Fatigue Syndrome  (mild)
  • Orthostatic Intolerance (OI), including both POTS and NMH
  • Joint Hypermobility Syndrome (JHS), including recent incidence of TMJ (temporormandibular joint disorder)
Despite that alphabet soup of acronyms, he is in great shape. Simple treatment with Florinef for OI (starting over 8 years ago) left him pretty much symptom-free for CFS and OI. He goes to school full-time at a challenging charter school for math & science, can do anything he wants, and even plays soccer competitively. In the last few years, his only health problems have been multiple knee surgeries for cartilage problems, which may be related to his hypermobile joints or perhaps just from playing soccer.

Back in February, we noticed something strange - a line across his back that looked like a stretch mark. We recognized this line from our older son's experiences with bartonella (he also has Lyme and babesia, as well as CFS). Our younger son didn't have any other symptoms, though, so we took a wait-and-see attitude. Now, 3 months later, there are 3 of those lines on his back. He still doesn't seem to have any other symptoms that would indicate Lyme or bartonella, but we wanted to be proactive and get him evaluated early.

This was a mistake we made with our older son. Our pediatrician kept reassuring us that those lines were stretch marks - that didn't make any sense to us, but we accepted her explanation...for years. Eventually, we got to the point described in my first bartonella post and figured out for ourselves that he had it. Unfortunately, by that time, the tick infections had been present for many years. Now, four years after diagnosis, our older son has gone through some terrible times during his treatment. He is getting better slowly, but it has been a long and difficult road. We don't want the same thing to happen with our younger son.

So, I took him to see our Lyme doctor today, who agreed that the lines look like bartonella but was interested to hear that he didn't have any symptoms. Our son, meanwhile, is angry that I even took him to see the Lyme doctor - he says it's a waste of money, that he's not sick. And now we wait for the blood test results...which I know from all of our other experiences are a very poor measure of whether Lyme and other tick infections are actually present. As I explained to my son today, any positive result for any of the tick infections will be evidence that he was bitten by an infected tick.

I've been having a rough week, so all of this is just more stress piled on top. I have to keep reminding myself not to jump ahead and worry - one step at a time.


Evie said...

I found this post because of the combination of "Bartonella and hypermobility." After a couple of years dealing with GI symptoms, POTS, joint pain, horrible headaches and neck pain, and fatigue, I finally was able to pinpoint my 16 year-old's problems to a cat bite at age 2. I'm 99% sure it's Bartonella. I wanted to add this because most people who have Bartonella get it from a cat scratch, not ticks. Had I read that over and over again, I probably would have connected the cat bite much sooner. Because it had been so many years, I just didn't. It was when I was doing a timeline of her life for her functional med doctor that I realized she was bitten by the cat 9 months before she started having chronic UTI's. Even then, I did not relate the two at all. I would even go so far as to say that if someone has ever owned a cat, they probably have Bartonella in them. But most people have an immune system that can handle it. It's when the immune system tanks (like from a tick bite/Lyme down the road) that it rears it's ugly head.

Sue Jackson said...

This is just one of my many posts on bartonella, Evie, so I'm not sure if I mentioned the cat connection in the others, but it is an excellent thing to point out!

The other, more common, name for bartonella is Cat Scratch Fever, and it is indeed often transmitted by cats. However, bartonella is also a VERY common tick-borne illness. In a study in New Jersey (the state next to us, here in Delaware), MORE ticks were found to have bart than Lyme! It is far more common than most people realize - from both cats and ticks - but is unfortunately rarely diagnosed properly.

I hope your daughter is now improving with treatment - thanks for adding that important information!


P.S. Our younger son turned out not to have Lyme or bartonella, in spite of the telltale lines. He had no symptoms, and our LLMD guessed that his immune system probably fought both of them off effectively. I am happy to report that soon after I wrote this post, after 10 years of mild ME/CFS, he was able to stop all medications and was completely symptom-free. He's now 21, in his senior year of college, and still 100% healthy :) Our older son is still battling ME/CFS, Lyme, and bartonella 9though he did get rid of babesia).