What's my problem?!!!!!!!!

[immissg2u]

Since I was 13 (I am now 47), I have had random joints swelling - it always will start with one knee, then it moves on to the other and so-forth. For the first few years it was pretty painful, and the tissues around my knees would ache if I didn't sit down with in 2-10 minutes, depending on the day. I could push the fluid from one side to another and had had both knees drained many times only to swell back. My knees were so swollen that I couldn't bend them back all the way or kneel down. The Rheumatologist back then diagnosed it as Juvenal rheumatoid, then another time, he said I had lupus - so that's what we stuck with in labeling it.

Throughout the years I would get random levels of flares for 3 or 4 days up to a few weeks, then it would go in to hiding for long periods with no sign I had ever had it. I have been in a remission state for maybe 15 years with very few small flares.
Fast forward to 2012... I got a sharp pain on the side of my right knee that lasted for about 15 minutes, then my knee tissue started swelling, but not like before, there was no fluid, it was just the tissue. After a few days it started to back off while the left knee kicked in, along with a rib joint, thumbs and the right hip joint huuurrrt... all I could do is stay on the couch because I couldn't walk much. In the mean time, I lost 2 of my jobs because I couldn't even walk to my car with out help. I've been using a wheelchair and a walker. My whole body had a vibration inside no one could see until it became "Parkinson's-looking"... but not everyday or all day.

The current doc did all the blood tests, examined my joints thoroughly and said he didn't see any signs of swelling, nor did the blood work. No RA, ANA, or any other kind of "A's" positive. In otherwords, I felt like a fool rolling in to the office in a wheelchair, needing assistance from my husband to get to the exam table, then being told there's nothing wrong with me! Like hell! I could hardly walk on my own, both knees, and sometimes my leg muscles, couldn't hold me up, they would collapse out from under me - and I hurt!

This time is so different from the early years; no visible swelling (although I sure can feel it), muscles getting involved (usually associated with tremor shaking)... The things that are the same are; independent, random joints, feeling of tightness in affected knee(s) which gets worse when standing or walking, fluctuating levels of handicap, and at any moment symptoms will change, joints will change, and levels of handicap will change.

Throughout the "lupus" years, several other doctors tested and never saw a positive ANA. They said I do NOT have lupus, but I continued to call it that because it was the closest thing to match my symptoms (I thought).
One rheumatologist said it's most likely seronegative arthritis because of the asymmetry of the joints involved. I looked that up and it doesn't seem to be a match for me.

Here are the things I know in order to help commentors from going the wrong direction in helping me:
I don't have Lyme’s, RA, Parkinson's, Fiber Myalgia, and apparently don't have lupus.
It doesn't involve my skin, bowels or organs.
I am otherwise in perfect health
Asymmetric joints at times, other times all at the same time.
I've done food allergy testing
It does not coincide with stress or weather
My knees are perfect under x-ray...

The one thing that MIGHT have started this whole thing as a teen, is I had to go on birth control pills for a while to regulate my period (had it most of the month and was anemic)
I haven't taken it since then though.

To date, 6/25/12, I have great days and then medium days, but I can walk fine on my own - limping sometimes.
I am not well enough to take my housekeeping jobs by any means, but, with rest, I can get around for a good 20 minutes before I have to sit again.

Thanks for taking the time to answer, and I hope this has made some feel not alone in a similar situation.
Miss G

[immissg2u]

The test results for Lyme came back negative (...of course it did!), so now I don't know whether I don't have it, or just got a false negative. No other disease matches my symptoms but Lyme, furtheremore, nothing else is showing up as anything other than "normal". I know I have a chronic condition/disease, but what the heck is it??

[immissg2u]

I gave blood yesterday and in a week I should know if it's Lyme's. I have to say, if it weren't for you I wouldn't be testing for it. When I look at symptoms for Lyme it matches me so well... If it is positive, do antibiotics cure it? How is life for you after your diagnosis?
Thanks so much...

[immissg2u]

So, could it just only show up as a connective tissue disorder and that's it? It's seeming to be going back into remmission now. Wouldn't it get a lot worse at some point and grow in problems, never leaving at this later point in my life?

Remind me what I should specifically ask the doc for a reliable test?
Thanks

[Ricobord]

It takes about 3 weeks of high dose amoxicillin to treat it when it first starts.  Later on, it takes a whole lot more than that.  A week or two will not make a significant difference once the infection is established.

And lots of people don't get a rash (about half).  Many people never get the initial flu like symptoms or a fever. For some, a symptom or two just appears and then various symptoms come and go.  It is a highly variable disease.mNo two people have the exact same disease presentation and progression.  One person's Lyme might look like RA and another's, like mine, might look like MS.

It might be worth a Western Blot...

[immissg2u]

I'm sorry to hear of your disease. My half brother had it as well.

I will have to look into it. I never had the rash or fever though... Throughout the years I have had pretty strong doses of amoxicilin for sinus infections after a cold. I think that's one of the treatments.

Hope everything goes well for you.

[Ricobord]

What you describe is consistent with Lyme Disease, especially because test results don't show much. It is very common for someone with late stage Lyme Disease to feel terrible, and yet be told by doctors they can't find anything wrong. Even the cycles of remission and flare ups are known.  I had cycles like that for nearly 5 years before I developed chronic symptoms of Lyme.

It is possible you got a mild version as a kid (your migrating joint pain is common in kids), which your immune system held in place.  The more recent and severe symptoms could be a result of a major stress or even getting infected again, allowing the bacteria to overwhelm the immune system.

What many people don't realize is that between 30-50% of Lyme patients test false negative on antibody tests.  There are multiple reasons for this.  You can Google "Tom Grier Lyme" to read a scientist's explanation of why the tests cannot determine the diagnosis.  

There is a specialty lab called IGeneX that does more advanced testing and finds more cases that other labs miss.  They also will show evidence of Lyme antibodies ignored by the CDC surveillance criteria, which was developed to produce extremely few false positives. It was not intended as a diagnostic standard. I tested false negative twice before I got tested at IGeneX, which showed me diagnostically positive, even though I was CDC negative.

You are welcome to come post your question on the Lyme Disease forum to get some other perspectives as well.