This Monday I went back to the Lyme doctor and went over my tests. Everything came back back negative which of course is not a surprise since titer tests basically suck when it comes to many vectors like Lyme and its various co-infections.
However, one thing did come back positive: bartonella, spp. Nope. It’s not a pasta. It’s the same thing that causes illnesses like Oroya fever, trench fever, and … that’s right … cat scratch fever. This time I actually have the picture to prove it. What I also found was that this particular bacteria has two of the biggest symptoms I have associated with it: fatigue (which is par for the course with many of them) and it is immuno-suppressant which makes sense out of my freakishly low NK cell count.
Then came the part about treatment. My wife asked him what the progress would be like and how long this one might take to treat. The response was, “This is one we do not know a whole lot about. And, well, they did not build Rome in a day.” There are basically four kinds of bartonella that cause problems for people. We do not know which this is yet. So here is what I will be filling my veins with over the next few months:
- Levoquil (200 mg)
- Doxycycline (200mg)
- Vitamin D supplements
- A probiotic at night since every bacteria good and bad in me will be dead
- Magnesium since the Levoquil has a history of causing weak tendons and therefore rupture
It also means that I will get a nasty Jarisch-Herxheimer reaction all over again. This means that I will feel a hell of a lot worse before I get better - for the third time now. It’s like those commercials for different things like dandruff shampoo, Feel that tingle? That means it’s working! Super.
The good thing is that we have worked out a plan for me to get rest around this kid/dog crazy house. I am sleeping in the guest room a few nights a week and letting her fetch the night crawlers when they freak for no apparent reason. I am thinking that after a long day of course prep, my full time job responsibilities, teaching a new course, and then getting home at about 7:40 that tonight is a good night for that.
Here’s the rub. My primary care physician (PCP) was not going to recommend I go to the Lyme doc and he was going to start looking for RA and chronic fatigue issues. Now many Lyme docs will assert that chronic fatigue is probably an infectious disease that has gone undiagnosed. I am kind of with them after getting indisputable visual evidence of one of the bacteria that is causing me pain. Time to go back to my PCP with the picture I guess!
Now I consider myself to be of above average, statistically at least, intelligence and pride rational deliberation over passionate engagement with things. I like evidence and always like to understand why a claim is substantiated and on what grounds. But even with all of this, I can see how mis-diagnosis can make anyone literally go nuts or question their own sanity. The only thing to keep me even keel was the clear fact that things became physically different for me, radically different, after I noticed the EM rash - the dead give away for Lyme - on my arm. That is hard evidence enough for me to know that my suspicions were not only founded, but that I could not trust the opinion of my PCP with this anymore. This visual evidence does a lot to confirm what I suspected and therefore, empowers me a bit more to trust my instincts and how I have been pursuing verification that those instincts are at all founded in something reasonable.
Not everyone who is sure that there is something wrong with them despite what doctors and tests tell them to the contrary. This is something quite clear. If insurance would cover better tests that are all available in this country of free enterprise, then perhaps the popular diagnoses of certain symptoms would go a different route in many cases. Now that does not mean that it is all Lyme as some will tell you. But it is neither all hypochondriasis either as many more will simply tell you.
In May I have more tests to review. This time we will look at T cells again along with iron levels and something called a spectra cell which will get sent off to another lab. This will look inside of the cell structure to give another view of my body that an HMO would probably think as something frivolous.
Add New Comment
Viewing 2 Comments
Thanks. Your comment is awaiting approval by a moderator.
Do you already have an account? Log in and claim this comment.
Do you already have an account? Log in and claim this comment.
Do you already have an account? Log in and claim this comment.
Add New Comment
Trackbacks