A week into treatment and new lab results.

So I started treatment on September 1st with Zithromax 500mg pills daily. I initially started to feel better (in regards to my joints) but then it seemed to level off and now I'm at a standstill. My joints are still bad enough that I am having trouble walking, especially in the morning and the evening.

On Saturday I checked the mail and had my lab results from the rheumatologist. It showed that my HLA-B27 was positive! So it could certainly mean that I have reactive arthritis as well. And after researching, I've come to the conclusion that the reactive arthritis was caused by the Lyme disease. So yes, I have both. reactive arthritis is an HLA-B27 associated disease. This tendency is genetic and can lay dormant, a virus or bacterial infection can "waken" it and start the ball rolling. In my case the Lyme bacteria was the culprit. Of course, this is just my best guess. Unfortunatley, my MD and my Rheumatologist don't agree on my diagnosis or my treatment. Arrrgh. What a nightmare. Can anything be simple?

My appt with my MD is on 9/20. My Rheumatologist appt is in Oct. So, what now?

Dr. Appoiintment, and 1st day of treatment

Today was my appointment with Dr. Albers. Before I went I picked up my labs from the rheumatologist appt. My CCP was negative. If the CCP was positive, then that might be indicative of rheumatoid. Although, I've pretty much ruled this out in my head already.. Still awaiting the HLA-B27. Geez, where the heck did they take that vial? China? On a slow boat?

So I went armed with questions, which I will write below. But the short and the long of it is, I will start 6 weeks of oral antibiotics (yeah!!!!!) and follow that up with another blood test. If results show progression, then I will continue with pills. Unfortunately, she said it's pretty rare that the pills take care of it, but we have to try the more conservative approach first. If there is not enough, or no progression, then I will need to start IV antibiotics. My treatment with either route will be approximately 1-3 years long. Ughhh....

The good news, I can still have red wine. Yeah! The bad news, I need to avoid gluten!!! I think I'd rather quit the wine! I love my pasta and breads! Those are my main staples! Plus, I don't really want to be one of those "special needs" people, who has to order special. blech. That's not me! I love food, and love to cook, and don't want to cook out of "special" crappy cook-books. It's funny, with all that I'm facing, I choose gluten to whine about the most, LOL ;)

So tonight I take my first antibiotic, Zithromax 500mg. I'm excited to be starting, but a little worried about the herxing. What is herxing you ask? Well, when the antibiotics start to do their work, the Lyme spirochetes release toxins into my system, and I will have a reaction. I'm not sure what it will be because everyone is different, it may be that my inflammation gets worse. I will have these reactions, or flares every 4 weeks or so, and they will last 2-7 days.

Here are some of the other questions I asked:


1. Test results?
IgA will get worse then clear. Indeterminite will show positive. IgG will get worse, then should clear. (she basically helped me to interpret my results.)


Will I be retested?
Yes, after 1st 6wks, then depending on symptoms.

Insurance pre-authorization?
Need to get better insurance, Anthem will not pay for IV antibiotics past 1 month.

Do I have early or chronic Lyme disease?
Chronic, with an acute flare up.

Do I need to be worried about being immunosuppressed? No, should be okay to work at hospital.


Diet? Alcohol? Gluten free will help reduce symptoms, and avoid a possible gluten sensitivity. Red wine ok.


How long before I’m better?
I may be on treatment 1-3 years

Joint damage? Not as long as its lyme causing the flare up, and not rheumatoid.

Work? She prescribed non-narcotic pain med’s and I will try and start next week.


Who do I call for questions? Call her MA, and follow up appointment in 2 weeks

Lyme results

I went to pick up my lab results from my doctor to interpret them myself because I was too impatient for her to call me. Of course I had a hard time figuring out what the heck it all meant. I read it through, decided I was negative, and then my phone rang and my doctors office called to say I was positive for Lyme and the doc wants to go over everything with me on 9/1, next Wednesday.

I am still in denial, so I decided to go get the labs done that the rheumatologist ordered for me yesterday. Because if my HLA-B27 is positive, then I will certainly question Lyme. If it's negative then I will have to accept my Lymey fate. I may have to accept it anyway though, because I reread everything tonight, did a little research, and yes, it does in fact appear positive.++++++++:-(

In the meantime, I sit here, with my swollen, painful feet on a pillow, waiting again, for what is to come next. The whole hurry up and wait game. This is ok though, I keep telling myself that it could be so much worse. I could have something sooo much worse. So in perspective, I should be happy. There are some people out there that would love to "just have Lyme"...

Rheumatologist appt

So I went to see Dr. Scully today in Reno. I was sceptical of him, but left the appt satisfied, feeling like he really listened and took time with me. He spent over an hour with me, measuring My range of motion, checking for effusion in all my joints. Turns out, I have the same amount of fluid in both knees, even though the right knee is the one with limited range of motion and with the most pain, stiffness.

He said this definitely does not present like rheumatoid. He feels confident in ruling out RA. However, he believes that if this isn't Lyme, that it may be an HLA-B27 related arthritis. Bodie tested positive for a genetic marker named HLA-B27, which is a marker for ankylosing spondylitis. Bodie doesn't have AS yet, but could possibly develop it as a young adult. I'm familiar with this genetic marker. I didn't know that B27 is also related to other autoimmune arthritic conditions such as reactive arthritis (aka Reiters Syndrome). He said that it does look to him like reactive arthritis and wants to test me for the HLA-B27 marker. Now this is all if the Lyme comes back negative.

If it's autoimmune, then I will start on the same drugs that they treat RA with. He will start me with methotrexate weekly injections, and also initially pairs that with Doxycyline. It's Interesting, he said there are studies that doxycyline can help in the first year or so of symptom onset. Of course this is only if the Lyme is negative.

This morning I called the lab in CA and they said they faxed the results to my doc yesterday, so I called my doc's office and left a message saying PLEASE call me this a.m. with my results! So for now, I wait...................

Rheumy...

So I had a good couple of days, feel like I'm finally starting to get better. However, I've realized that I am definitely flared up bi-laterally. With the exception of my left elbow and shoulder. So for now it's both feet, both knees, both ankles. The ankles are the newest ones added to my collection of flared joints. I am so tired of people staring at me when I walk. because of my ankles, sometimes I wobble and it probably makes me look a little drunk. Which isn't good when you're taking your daughter to cheer practice, and all the Mom's are staring. Whatever...

Made it through yesterday with only 2 vicodin. 1 in morning and 1 at night. I was going to try and just do Ibuprofen this morning, but I was in a lot of pain this morning, and I have to drive to Reno (1 hour) this afternoon. So I took 1 to ease the pain. Should be worn off by the time I leave.

So I managed to get an appt with a rheumatologist in Reno today. I am so happy for this because at least now I can either rule-out, or confirm a rheumatology diagnosis. This is at the same office that Bodie goes to, but different doc.

I will update after appt.

Back to work- sort of

So my wonderful boss was nice enough to find some work for me to do around the office. I did chart audits yesterday, and today and did patient call-backs. Yesterday was 3 hours at a desk. Then Art and I went out for dinner at a Thai restaurant. I had yellow curry, it was delicious. Unfortunately, I was in horrible pain last night, I had a restless night of sleep. I had the upper back/spine type pain, that wrapped around to my ribs. It made it hard to take a deep breath. THe spine type pain seems to be muscular, but it's so localized to the spine and ribs, it's hard for me to locate exactly.

This morning was rough, but I loosened up enough to be able to go to work. I worked for 4 hours, and loved every minute of it. I love call-backs. I call patients who have been discharged from our hospital to check in on them, their medications, MD appointments, and any concerns they may be having. I love talking with the patients. I can't wait to go back to work, but night shift worries me. I always flare-up at night, what if this happens on a busy night at the hospital?

commonality. 8/16/2010

So, apparently Lyme means different things to different people. I have been online tring to find other stories similar to mine. They are all so different. Some are more neurological in nature, some musculoskeletal. Some complain of a fog like feeling in their mind with anxiety and short term memory loss. Fortunately, I'm not experiencing any of that.

The last two nights my pain level has been through the roof. I woke up last night at 2:30 am, and took a pain pill. I used crutches to go to the bathroom, and walking was so hard it brought tears to my eyes. I hate this pain! Tonight, I am not drinking any fluids so hopefully I don't have to walk to the bathroom.

I called my doc today to ask if I could treat the symptoms so that I can function, work, etc. She said that until she has an official diagnosis she does not want to treat in fear that we may exacerbate the symptoms. Makes sense to me. I called my boss and asked for some sort of desk work, she is going to work on finding something for me, yeah!