I've got Lyme disease

Well this is disappointing, my GP called at 7:30 last night to tell me my Lyme disease test came back positive. She phoned in a 3 week round of doxycycline which I started taking this morning. The thing is, I've never had the bullseye rash. As best I can remember this is the first time I've been tested for Lyme disease, in spite of always having been very open with my docs about the fact that I pull a dozen or more attached ticks off myself every summer, and have been doing so for probably ten years or more. I live in the middle of the woods, I'm a rural girl. Whenever I've mentioned the ticks the doc's always asked about a bullseye rash and then decided I'm probably fine- I have absolutely no idea how long I may have had this. Fatigue? Well duh, I do have ITP, of course I have fatigue. Joint pain, muscle pain, aches... again, yep. I've always associated that with either ITP or the "connective tissue disorders" that my diagnosing ITP doctor warned me about thirty years ago.

So I'm reading up, finding everything from 2 weeks on antibiotics to 2 YEARS on them... yikes, that's kind of a broad spread there and since I have no idea what are Lyme symptoms and what are ITP and what are AGE, how in the heck am I going to know if I'm "cured" or not? Anybody here ever have Lyme disease, any thoughts?

This could be a good thing. A VERY good thing:

www.ncbi.nlm.nih.gov/pubmed/8183774
Lyme disease can go undetected for years and cause thrombocytopenia.
The thrombocytopenia can be reversed when the Lyme disease is cured.

[strike]Is this your first test for Lyme disease since your ITP diagnosis?[/strike]
edit: you already answered that!

libelder,

I read your post a couple of times. I think that I just might call Mayo Clinic or Cleveland Clinic and get some input from them. Just a thought. I think you are right in your efforts, read and seek authoritative opinion. I will spare you my humor at this point! Good luck in your quest!

Keep us posted!

Jeffrey

Well wouldn't that just be a kick in the pants? I got DX with ITP 27 years ago and until Nplate, nothin' ever worked. This damn disease has put me through hell in the last 27 years, I've had a brain bleed, I'm on disability... if a few weeks on antibiotics "cures" me, I will be stunned. Interesting. You've given me food for thought!

27 years? That would be a stretch!
Too much to expect, but not too much to ask.

Yeah, surely I'd have had symptoms at some point... still, one can hope. I'm just stumped about how I'm supposed to judge when I'm "over" the Lyme disease if I can't say I've ever had symptoms- I attribute pretty much all my aches and pains to age and/or ITP, I wonder if I'll be able to tell the difference? Time will tell I suppose.

Did they do the followup test?

Enzyme-linked immunosorbent assay (ELISA) test. The test used most often to detect Lyme disease, ELISA detects antibodies to B. burgdorferi. But because it can sometimes provide false-positive results, it's not used as the sole basis for diagnosis.
[...}
Western blot test. If the ELISA test is positive, another test — the Western blot — is usually done to confirm the diagnosis. In this two-step approach, the Western blot detects antibodies to several proteins of B. burgdorferi.

www.mayoclinic.com/health/lyme-disease/DS00116/DSECTION=tests-and-diagnosis

I'm not entirely sure, they are to mail me the results. I just told her to test me for every tick-borne illness she had a test for, and based on how she sounded when she called I may be her first Lyme's patient. I will have been on the doxycycline for several days before I could get another test and likely that would screw up the results... I think at this point I'm stuck with the dx. and treatment, we'll just have to see what changes in three weeks besides me having a major ice cream jones.

Hi Libelder, I'm curious, are you feeling any better after the Lyme treatment?

I was bitten by a tick in 1987 and had some symptoms of Lyme disease, was tested several times and results were positive. My next door neighbor was a physician at the local community clinic and he treated me "off the books" so to say. Because of that, it is not considered a "documented case." First round of abx did not work, got a second one after a woman who had had lyme disease for 10 years and was repeatedly misdiagnosed became a patient there so they knew to give the doxyciclin, which did relieve a lot of my symptoms. I never had the rash either.

Since my clinic thinks I did not have Lyme Disease I am reluctant to bring the subject up as they would consider it to be hypochondria. I'm sure others have experienced the "if we don't know what it is it must all be in your mind" phenomena. I have to remind my doctor that I don't have a spleen every time I see him, it is in my records, but they don't review them before seeing you.

Also, I don't think Lyme Disease ever "goes away" anymore than syphillis does. Once the organisms are in your system they are there for good.

I think the antibiotic regimen is supposed to kill off the active bacteria but the antibodies don't all go away… I have no idea. I'm surprised at how little information there is out there. From the little I've read it does seem to stay in the system and sounds similar to autoimmune flares.

I was just wondering if this person experienced any noticeable change after the antibiotic regimen was completed. Or even if the only noticeable difference was side effects from a strong antibiotic regimen.

I was just diagnosed with Lyme. I'm kind of shocked that I hadn't been tested for it before considering that I live in New England which is Lyme country. I had never come across a link to lyme and itp but my new primary care doc made the connection and ran the test. She keeps remarking that she's never seen anyone test more positive so I guess I really have it. I'm about to start a 28 day regimen of doxycycline. So for now I guess my plan is to get out the sun block and avoid dairy.

The new Lyme discussion group I just found is no where near as well organized as this site. :sick:

**whining**

We might need to infect Sandi with Lyme disease and send her over there to clean things up.
Erica

Oh sure, sign me right up for that! :kiss:

still_kris wrote: Also, I don't think Lyme Disease ever "goes away" anymore than syphillis does. Once the organisms are in your system they are there for good.

With syphillis the bacteria does go away with treatment. The antibodies stay for a while but not for long. Same as with Lyme Disease. Both are caused by spriochaetes so both will go with treatment.

Ha ha Erica! Good idea but definitely wouldn't wish this on anyone. I'll probably find more organized sites. It seems there's way more fringe theories out there for Lyme than there are for autoimmune disorders, if you can believe that, so there'll be a loft of sifting to go through.

Ann, thanks for the info on the bacteria dying off, that's reassuring to hear.

I'm currently trying to find reasonable info on how much antibiotics will be effective. My doc prescribed 200 mg per day of doxycycline for 28 days and the interweb folks are saying double that's barely helpful for people who have it long term...

It would be nice if pdsa added Lyme disease specifically to the list of possible other causes for ITP. The list does say bacterial infections can cause ITP but it seems like Lyme is so common yet so very overlooked by the medical community that it would be helpful to list it specifically. For some reason I just never considered it. I mean I've never even seen a tick or have ever had any mysterious bug bites that I can remember so that's partly why I didn't suspect it. So thankful my new dr listened to my list of symptoms that I've had over the years and offered to run the test. If I can at least kill off an active bacterial infection that's got to be good for something.

You might want to go to groups.yahoo.com and search on lyme. They have several active groups.