Appointment In Nc

[Dizzy Dame]

Hi All,

First, I wanted to thank everyone who sent me emails or PM's wishing me good luck with the antibiotics! Your support means so much to me, and I'm so glad I have all my friends at this forum cheering me on through this very frustrating and difficult journey.

I went to see the infectious disease specialist today to go over my lab results and to plan a course of action for the antibiotics. I thought we were going to start the IV today, but after going over my lab results, and given the severity of my symptoms, we've decided to start with a low dose of an oral antibiotic "zythromax" for the first 2-3 months, then revisit IV antibiotics after that time.

The problem is that I'm already so sick that a bad reaction to antibiotics could be really bad. We all want to make sure that the treatment isn't too strenuous on my body, which makes sense. Even though part of me wants to yell "get on with it!", I know slow and steady wins the race (Emily, it seems I'm going to be a turtle as well We'll have to get T-shirts made or something )

So I'm going to fill the prescription and start it as soon as I get home to Maryland. We're hoping that the low dose will keep the herxheimer reactions at a minimum. But the good news is that the doctor has treated many young women with the EXACT same symptoms as I have (joint pain, fatigue, dysautonomia) who have made complete or almost complete recoveries.

I know I'm probably flogging a dead horse at this point, but just to say again: if any of you still don't know the cause of your POTS, and have tried other treatments and aren't improving, I'd strongly urge you to see a doctor who knows about lyme disease. I feel it can't hurt to explore it as an option.

[nikigrl8883]

dizzy, im gland your getting somewhere and i wish u the best of luck with the antibiotics hope they work for you...i dont know if you answered this when i asked you....where you actually diagnosed with lyme by a blood test? or is the doctor just going by your symptoms? i am going to try to get antibiotics to try somehow for lyme///the only thing is ive only been sick since april are there ticks around before april? i thought they cam out in may and summer months...ughhh how long have you had pots out of curiousity

[Dizzy Dame]

Hi Nicki,

I was diagnosed based on a combination of my lab results and the doctors clinical findings. My labs came back negative the first time (on the ELISA test), and quasi-positive on the 1st western blot (band 41 was positive but nothing else). My most recent labwork shows that two bands are positive (bands 31 and 41) and three bands are "indeterminate" (meaning they aren't stong enough to be declared positive). The CDC requires that 5 bands be completely positive for an official "positive".

But, as I said, since I have all the symptoms of lyme disease, a history of tick-bites, and my labs were quasi-positive, the doctor felt pretty confident that I have lyme disease. However, we can't say the diagnosis is iron-clad until we see how I do on antibiotics, so in essence, there's still a bit of a gamble involved.

Many people test negative for lyme, sometimes multiple times, before getting a positive test. That's why most lyme-educated physicians know to look at the clinical findings in conjunction with the blood tests. Unfortunately, many physicians haven't read the most up-to-date literature on the diagnosis of lyme disease, and are ignorant to the fact that a negative lyme test DOES NOT exclude lyme.

As for how long I've been sick, it's difficult to say. I first started having joint pain and fatigue when I was 17 (about 7 years ago now) but my POTS and other autonomic symptoms didn't begin until the summer of 2005.

I hope that answered your question

[nikigrl8883]

Hi Nicki,

I was diagnosed based on a combination of my lab results and the doctors clinical findings. My labs came back negative the first time (on the ELISA test), and quasi-positive on the 1st western blot (band 41 was positive but nothing else). My most recent labwork shows that two bands are positive (bands 31 and 41) and three bands are "indeterminate" (meaning they aren't stong enough to be declared positive). The CDC requires that 5 bands be completely positive for an official "positive".

But, as I said, since I have all the symptoms of lyme disease, a history of tick-bites, and my labs were quasi-positive, the doctor felt pretty confident that I have lyme disease. However, we can't say the diagnosis is iron-clad until we see how I do on antibiotics, so in essence, there's still a bit of a gamble involved.

Many people test negative for lyme, sometimes multiple times, before getting a positive test. That's why most lyme-educated physicians know to look at the clinical findings in conjunction with the blood tests. Unfortunately, many physicians haven't read the most up-to-date literature on the diagnosis of lyme disease, and are ignorant to the fact that a negative lyme test DOES NOT exclude lyme.

I hope that answered your question

cool thanks for filling me in i was wondering how u got diagnosed , now i know.....ill talkt o my doc about it im sure **** look at me like im nuts

[futurehope]

Best of luck with the lyme treatment and I am looking forward to you posting and telling us of your improvement.

It's interesting that you should mention zithromax, as I just had my second course of it for a throat infection that won't go away.

Two 250 mg pills to start, and 1 250 mg pill for 4 days. Two weeks later, I repeated it.

It wasn't exactly easy taking it because I got headachy and sick feeling but by the fourth day I was adjusted.

Without being aware of it, I had noticed while I was taking it that my POTS symptoms of feeling intolerant to orthostasis was diminished.

I don't know if it was my imagination or the pill.

Anyhow, my symptoms are back again so who knows.

If you know of any lyme doctor that is good is Maryland or for that matter in NC where you went, PM me. Thanks. If you don't, I think I have some names I may look up.

Whatever you decide to do, it may not be easy, but it will be worth it when you improve.

[DancingLight]

Lauren!

I MUST head to bed as I am just absolutely wiped out!

But, I had to read your post and hear your update!

Sending you good thoughts...I have more to respond to, but you know...I'm here cheering you on.

Honestly, I am relieved you are starting with oral abx and not IVs...I didn't want to say anything earlier b/c it's your path to choose...but I was soooo nervous about the IVs!!!!!!!

Do you know why he picked Zith??? Just curious. I'm still pluggin along on the minocycline at only one dose every 3 days...and herxing on that. I don't want you having happen to you what happened to me this past winter when we went to fast!!! Remember, it's more important to TOLERATE treatment than to have to stop b/c you went to fast. I know it's hard to be patient though! Okay, done 'mothering' you now! hahahahahahaha!

As for the tshirts!!!!! That's a good idea? Are you up for it!!!! I'm game!

Later alligator!!!!

Em

[Dizzy Dame]

Future hope,

I sent you a PM with the names of the doctors I've seen (and liked) who know about or treat lyme. Good luck!

Em,

T-shirts it is then!

I'm actually pretty relieved myself not to be doing IV antibiotics. I was worried it'd be too much so I was very happy when my doc said the same thing. I think he picked Zith because of the specific bands they found on my test...something having to do with health insurance being more willing to pay for antibiotics that specifically target what I tested positive for...and zith also likes to kill borella, so it seems to be a win-win.