My background

A little about me:

I became sick after a visit to the East Coast last year. I used to be very active - lots of hiking all the time, and suddenly I couldn't get out of bed from the severe fatigue. All my symptoms appeared suddenly following a week long "flu". Over the past year, I've developed terrible joint pains, muscle pain and severe nerve pain in my arms. I've also had a low grade fever that has lasted for 9 MONTHS that makes me feel like crap all the time! Recently I've had such terrible pain in my back that it's difficult to walk and I have to use a cane. I'm basically bedridden and haven't been able to work since February. I've also developed neuro symptoms which have been a real challenge. My life has just been turned upside down. I've seen a dozen doctors and was finally diagnosed with Lyme in July of this year. I was started on Doxycycline last year for 2 months by my Primary but she said that was the max treatment. Am now with an LLMD and taking Doxy with Flagyl. This whole experience has been so difficult and while I try to stay positive and trust that there is a reason I'm going thru this, I have days where I'm in so much pain and feeling so much frustration that I just break down and cry. I'm usually a really optimistic person too! Am so happy to find Lyme Support Groups and Forums - it's nice to know I'm not alone! I just never thought anything like this would happen to me - I feel as though I'm living someone else's life. ****Update on 12/31/2010 New Years Eve - It is 10 minutes to midnight and I'm reflecting upon the past year. I became sick in January of this year so that means it's been one YEAR of my life that has been taken away from this terrible disease. I SHOULD have been on a certain career track which I've been working towards for over 10 years. Instead - i'm practically bedridden and taking all kinds of meds that make me sick, zombie like and in one case - suicidal. (That would be the Neurontin (aka "Morontin") which I am no longer taking and can already feel my head clearing. That is some POWERFUL stuff. Now I'm trying Lyrica which can have the same symptoms but I have to do something about the terrible nerve pains in my arms and hands.) Anyway - I am fervently hoping that 2011 will be the year that I am CURED! (optimistic, i know) and 2010 will just be a bad foggy memory. Here's to finding my cure for Lyme!

Had to stop the Rifampin!

Great article about Herxing - pretty much describes what I've been going through for the past 8 days:

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=35

Sooo...I've been on Rifampin for the past 8 days and have had a really tough time of it. Have been so sick and the nerve pain in my arms feel like chards of glass being scraped down. Also every single Lyme and co-infection symptom (my LD believes I have Bartonella as well) have increased by 1000 percent. (fever, night sweats, severe nerve and joint pain, terrible insomnia, fatigue, mental fogginess, neurological stuff, etc. ) I pretty much have been unable to do ANYTHING this week and have just been so sick. So, today I made it to 8 days of the Rifampin and just had to stop. I called the doctor's office but no call back unfortunately so i have to wait until Monday now.

Anyway, I found this article about Herxing which made me feel better and wanted to share it. (see link above)

I've had reactions/herxing to the Doxycycline before which made me feel miserable but this Rifampin was Way worse. In a way though, I just had this feeling that it was really working because of the raging battle going on inside my body - but after 8 days of trying to do this on my own, I just had to stop. Maybe I'll try lowering the dosage, or pulsing it as the article suggests because I could really tell it was making the critters angry!

Ah...The Joys of Rifampin

So today I'm on Day 7 of Rifampin and Nystatin. I feel like hell and wonder how much longer I can go on like this. On the bright side, I'm trying to tell myself that all this misery will be worth it if I can get a handle on my Lyme and co-infections. My LLMD thinks that I also have Bartonella (tested positive for Lyme but wasn't tested for Bartonella) and this could be causing my continued fevers (still going on a year after I got sick) as well as my neuro cognitive issues. I've had severe joint, muscle and nerve (the TRIFECTA!) pain which have all significantly gotten WORSE since I started the Rifampin. I've had higher fevers, headaches, MAJOR insomnia etc. etc. I think I've really pissed off the stupid Lyme spirochetes and they are NOT happy. It truly is a battle: I'm trying to stay on these antibiotics for at least a month and it's only been 7 days. If I can get to 10 days - that will be an accomplishment.

Since I've never been a chronically sick person before, I've had to do some major adjustments in my life - physically and mentally. I think I'm finally coming to terms with the fact that I have to put my career on hold for a while, as much as that pains me.