I'm so glad I found this forum, I've been reading for a few days now and found so much helpful information.
about a month ago, I saw my Infectious Disease doctor for the first time. I've been sick for years, probably actively sick since 2011. Extreme fatigue, joint and muscle pain (the wake me up at night kind), stiffness, HBP, asthma, etc. I was diagnosed with Fibromyalgia back in 2012, but honestly I never really took that seriously. about 12 to 18 months ago, I started having really bad, but on and off, pain in my right lymph node in my neck. Awful pain, I could not even lay on that side to sleep. I finally remembered to mention it to my GP a couple of months ago, and asked her to test me for RA and things like that. She ran a lot of tests and did an ultrasound of my lymph node. The tests showed that I had an old Epstein Barr virus (IgG positive) and my WBC were a little low. Also the ultrasound showed inflammation that looked benign. So to be safe, she sent me to hematology and infectious disease.
Hematology was fine. But my ID doctor's testing showed that I have Bartonella (B. Hensalae IgM positive, which my understanding is that means it's an active infection). She also thinks I have Lyme, although the first test was negative. They sent me for more blood work so they could do a Western Blot (i do not know where they send it) and I'll get those results next week.
I guess I'm confused by the "active infection" part of that. I haven't been exposed to cats in many, many years. I did have a very bad scratch from a stray cat back in my late teens, but I'm in my late 40's now. Can you have active Bartonella that many years later? Also, I never had mono, so the old Epstein Barr virus is confusing. Honestly this whole thing is a bit confusing, lol!
I live in Las Vegas for the past 3 years, but I'm from LI, NY where Lyme is common. I've been tested for it quite a bit, so I can't believe it would be missed so often if I truly had it. And would the Bartonella show as "active" currently when I've been sick for so long? Like I said, I've been actively feeling bad for about 7 years now, but honestly I was having enough joint pain in the 1990's to be sent for PT and neuro consults.
And would someone mind explaining what herxing is? I did look at the "New To Lyme" thread, I just didn't understand exactly what that particular thing was.
Thanks so much, I appreciate any input. Oh, and they put me on 100mg 2x daily Doxycycline for 28 days. Hasn't helped so far, but it's still early...
Hello, NYVegasMom - I'm glad you found us here.
You can be exposed to Bartonella, and for many years your immune system can be handling it...and then when you have exposure to lyme, you're not able to keep it in check. Sometimes, it's not another infection, but a very stressful time in our lives that will cause the 'silent' infection to become active.
I believe I have been harboring Bartonella since childhood. I grew up with cats and had many bites/scratches
2013 was when I started to have symptoms, and one of my first ones was a swollen lymph node in my left clavicle area. I didn't know what it was...it was a hard, swollen and very sore lump.
My LLND identified it as a lymph node at my consult in 2014.
We can also have swollen lymph nodes with lyme - because generally with these infections, our lymph nodes are affected..
I am quite sure mine was from bartonella...as when I started bart specific treatment, I got another lymph node swelling behind my right ear.
Then several months later, the swelling of both went away...and haven't returned.
Do you have sore feet? Sore ribs? Nerve issues?
I'm impressed with your ID Dr. - considering she isn't lyme literate...she's done a good job so far.
Yes, the infection can be active for many years...until it's treated.
Herxing: When we treat the infections the die-off of the bacteria creates endotoxins that flood our system. These endotoxins create inflammation and result in a herxheimer reaction. That involves an increase in your current symptoms and/or new symptoms appearing.
What you can do to help with the herxing - is get on a good detox regimen. Start with a couple methods...and every few days add in another one.
100 mg twice daily of doxy isn't enough to treat bart unfortunately. This is why you will need a LLMD to treat you. Also, the testing may come back negative and you might want to consider testing through Igenex. They specialize in tick borne disease testing. The Lyme WB Igm and IgG costs $250.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi