my rheumy is trying to confuse me! Or is he right?

Which is very easy to do these days.....

I saw my rheumy yesterday; I see him because I have been dx with lupus, fibro, and RA. Yes, I realize that Lyme can masquerade as these illnesses, but it can also trigger them. Plus autoimmune diseases are all through my family, especially lupus, and no, we don't ALL have Lyme....we live in different parts of the country and I've never even met half of them! So there is at least some reason to believe that I have both Lyme AND lupus!

I wanted to discuss some recent bloodwork and also the fact that I've been forcibly put on part-time status at work because of my poor job performance of late (mostly due to attendence issues...when I'm really sick, which is most of the time, I can't go in to the office). I am applying for partial short-term disability with the help of the Human Resources people and I needed him to fill out paperwork for that too.

Anyway, it was a long and confusing appt, and frustrating because he wouldn't sign the paperwork and give it back, because he seemed to think I should go on full time disability.

But the REALLY confusing part was when he told me that "when you have lupus, your immune system is in high gear and it's gone haywire. It makes antibodies to anything and everything at random." He was trying to say that the fact that I'm making antibodies to Lyme doesn't mean anything. I could have had the infection many years ago and thrown it off myself, as some people do without antibiotics apparently. Or these antibodies could actually be for something other than Lyme, but they show up on the test as Lyme-specific....I guess that's possible? From what little I know about antibodies, your body can manufacture antibodies that are capable of attacking more than one type of cell, if the surface molecules happen to "fit" the proper configuration just by chance.

Anyway, he asked me if I feel better after being on doxy since January, and I have to say "no, I don't". And I'm on both doxy and zithromax now. I don't feel better. I don't think I'm having "herxes", or if I am I don't recognize them when they occur. I don't have some of the key Lyme disease symptoms, such as aversion to alcohol!

Maybe he's right and I don't have Lyme disease?

I don't know.....I'm just SO confused now. And I can't afford anymore to be shelling out all of this money for doctors and treatments that are not covered by insurance or only partially covered at any rate. I'm really tempted to just stop the antibiotics and all of the herbal supplements and everything.....but I just don't know.

Razzle,

Could MS light up Western blot bands?

1hunter,

I don't know for sure. I do know Lyme can cause brain lesions that look exactly like MS. I think there is some protein that can be checked for in the spinal fluid or something that can rule in/out MS...but I don't know much about all this.

Nasalady,

Judgment & decision making are impaird with Lyme. I struggle with these too. Do you have anybody with whom you can discuss options and all the plusses & minuses of each option? It might help clarify things for you...

Take care,

Thanks again for your replies....

Razzle, I am able to discuss things with my husband to a certain extent....sometimes it's hard though. He tries to understand what I'm going through but doesn't really comprehend from personal experience. Of course, this is why I have come to rely on this forum! So many of you DO understand!

betterhealth, I can relate to having to take a "vacation" from meds....I couldn't stop all of my meds, but have thought about taking a break from the Lyme meds just for a little while to see what happens. Both you and Razzle have said that when you do that, you get sicker. If I had the same experience, it would be one confirmation to me that I do really have active Lyme disease.

I'm still thinking about the med "vacation" though....I'm a little scared because I already feel so lousy. How much worse could this make me feel? A lot worse? That would not be good!