i wait while it continues

I was also diagnosed with Lyme in March of this year. I don't know how your journey started, but mine was full of headache and confusion.

Around the beginning of the year, I began breaking out on my legs from the knee down. It was very painful, so I went to the campus health center at school. I visited my doctor there 6 or 7 times (including several doses of Prednisone, 2 biopsies and an embarrassing pair of paper shorts down a busy hallway) before he referred me to an (expensive) dermatologist, who took 4 more biopsies (for a total of close to 20 stitches). The results came back as Leukocyclastic Vasculitis. The dermatologist prescribed me more steroids and some cream and told me I would be fine.

A few months later, I broke out again. The uneasy feeling I had from the dermatologist's diagnosis was confirmed. This time, I went straight home to my primary physician, the man who delivered me. He looked at my legs and knew instantly what to test for. He even came back to the room with a copy from a textbook about "Henoch Schoenlein Purpura" and pointed out that it actually worsens symptoms to prescribe steroids for HSP. He was also upset with the dermatologist for telling me that I would be fine, because every form of vasculitis (like HSP) has an underlying condition.

From there, I had more bloodwork, and I was also given a prescription of Doxycycline, as well as the hormone suppressant Danasol to increase the effectiveness of the antibiotic. A few days later, I got a call from my doctor's office with the Lyme diagnosis. I was given a 21-day antibiotic therapy.

Since then, it has been a journey to deal with the diagnosis at hand. The arthritic symptoms, dizzy feelings, and waddling are all too common for me, as well. There are many days that I don't want to get out of bed, but I have found that light activity makes me feel better.

I don't know how long I had Lyme before I was diagnosed, but I was lucky to not have more severe affects. My doctor said that my fair skin may not have revealed the bulls eye.

I don't know what my future holds, but I have a very supportive boyfriend that has been there for me for 3 1/2 years, and I love him even more for his help this year. I'm not sure what life will bring, if I will be able to have children, but I do know that I am finally beginning to feel somewhat better.

I have my days (right now I'm on three months of tetracycline after a string of breakouts) but the bad days are becoming less and the good more.

Praying for relief for the both of us, and anyone affected by Lyme Disease. Take care.

-Amanda

Oh honey. Thinking of you.
Hoping the 17th comes quickly.
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Oh, Nell.
I can't imagine.
I love that you are determined to get to the other side and find the gain, the good.
the grace with which you write it out here is already inspiring.
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I've actually noticed some improvement. I could actually see the level of the antibodies last time I broke out…it is gradually getting lower down my leg. My PCP said that eventually only up to my ankles, my toes, etc. should breakout, and then it should cease. He is very good about checking with me, often having me call after we change treatments.

I have heard of LLMD's, but my area does not seem to have any nearby (Southern Illinois) via an Internet search. I'm very confident in my PCP, he spotted right away what took 3 months for two other doctors. He is also an Air Force doctor, and an outdoorsman, so he probably does have more knowledge on things like Lyme than most PCPs. I really wish I would have gone straight to him. It would have saved me a lot of suffering while taking a heavy class load.

If I have been treated for candida, I'm not aware of it, but I have been on 2 different antibiotics since January. My PCP is very adamant about treating me from the inside out, unlike the dermatologist I saw.

Thank you for the information. It will definitely something to discuss if I have any more issues. So far, it's mostly joint pain and dizziness (but it is really hot here, and I'm on tetracycline, which could explain the dizziness).

Here's hoping you get the answers you need from the LLMD, and I'm sorry your PCP couldn't be more helpful. It seems the Internet doesn't have many answers, or maybe I'm just not searching correctly.

-Amanda

Oh, my. I can't imagine how awful you must feel. I'm praying for relief for you….soon!
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Nell, I pray you will be healthy again soon. Love
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@Amanda:

I don't know where my first reply went :–(

I'm SO glad you're seeing some improvement, and it sounds like you are one of the lucky ones that has a PCP that is taking this as seriously as it needs to be taken!

Candida is a fungus, it's found naturally in the body. When your body has enough good bacteria, it doesn't become a problem. But when you take antibiotics, it kills the good and bad bacteria, leaving your vulnerable to a yeast problem, which affects your immune system and can affect every area of your body. So if you've been treated for it, you could have been given antifungals for it. Just something to think about, in case you haven't been treated for it.

Thank you for the well wishes. I feel very confident in the LLMD I'm seeing in August, but I do wish I could find a doctor on my insurance plan, so this wouldn't cost me out of pocket. There's so much drama surrounding this disease. Instead of just doing what it takes to get patients better, many doctors simply give you a quick treatment and send you on your way, whether you're better or not. It's all about politics and egos.

Good luck with your treatment, Amanda. It sounds like you have a really good doctor.

(oh and as far as not finding much on the internet, or LLMD's online, most LLMD's do not "advertise" themselves publicly like that because they don't want to be investigated, have their license revoked etc because they are treating patients outside the typical guidelines for this disease. and I don't mean that they are doing anything weird or crazy to you, simply that they will treat you with months, or years, of antibiotics to get you better.)

Nell

PS
I'm reading "Cure Unknown" and highly recommend it.

@Nell Taliercio: I could read your comment through email, but it didn't show up. Weird. :/

I'm taking Acidophilus daily, which is a probiotic for digestive health. Great for someone like me who had stomach issues pre-diagnosis.

I think I'm going to ask my PCP if he is an LLMD, just to see if he knows what it is! Lol. I'm really blessed that he is taking it seriously, but he is also one of the funniest people I know, creating battle scene stories with sprioketes and antibodies, and analogies with a mean dog on a chain to illustrate how steroids work with HSP. He spent an hour with me upon diagnosis, and almost half of that since then, and explains everything on a biological level using one (or more) of his humorous illustrations. That I love. I will be devastated when he retires.

I wish they could get you in sooner. So sad to see this disease doing this to your body. Praying for you!
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