Oh wow...this was surprising

[Erin]

I went to my regular doctor today because I thought I had an ear infection. (allergies are probably causing vertigo, so I got Rx's for allergy meds) and while I was there, I asked him about the Western Blot that the MS clinic did for me that had the two Lyme specific bands on it.

First, he apologized for that nurse yelling at me a month or two ago when I called to ask about Lyme. He said that he wasnt there that day, and that wasnt his nurse that I talked to. She'd asked another one of the doctors my questions about Lyme, and apparently that doctor is one of those people that dont believe there's such a thing as chronic lyme.

My doctor, Dr. C said that when he saw the results of the WB, that it made him think. He's apparently just as curious as I am about what those two bands of bacteria are doing there.

I told him I have a WB test kit from Igenex. He said that if I wanted to, I could come to his office on monday and he'd do the blood draw for me and send the test kit in. All this time I thought he woudnt be willing to help me with that, and he actually is willing to help. So, I guess I'm going to let the vampires have a go at my arm on monday now. Yay!

I hope I get that test back before I go to the infectious disease doctor later this month, it would be nice to have some ammunition to back up my concerns about the possibility of Lyme.

I'll still be surprised if the test comes back positive...I still have a feeling that I actually have MS, at least I'm not getting my hopes up for it being something different (and more treatable) than MS...that way I wont be too disappointed if the test comes back negative.

[RuthHinWV]

Erin, I'm so happy for you; finally someone is listening & it was someone you thought didn't care. What I would ask the doc is, would he be willing to treat you for Lyme? If he doesn't know how & is not equipped to do so, then is there someone out there he knows who can or will treat you.

I think, from here on out, when calling your doc, I'd ask specifically for his nurse or someone he suggests you talk to so you don't go through all this again.

Again CONGRATULATIONS!!!!

Ruth in WV

[Erin]

When I go up there on monday for the blood draw, if I do a doctor's visit instead of a lab visit (lab visit is cheaper) I'll ask to talk to him for a second in the hallway or something and see if he'd treat me if it turns out to be Lyme. (and hopefully he'd do more than just give me a couple of months of antibiotics and send me on my way)

[Sonsie]

Erin, this is really great news! :) Hope your blood draw went well today.

IGeneX tests usually take 2-3 weeks. Maybe you could move your appointment with the infectious disease doctor back a week or two? (He likely will not welcome IGeneX results, however, so perhaps it doesn't make a difference.) And remember, diagnosis is clinical -- tests help somewhat but cannot be the determining factor. You will get negative results if your immune system has stopped fighting LD.

[Erin]

My blood draw got rescheduled for tomorrow. (doctor's offices seem to love to reschedule me a lot)

My infectious disease doc appointment is wednesday.

I pretty much fully expect that the infectious disease doc is going either laugh me out of his office or put a note in my file that I'm a nut or something. I'll probably just end up letting my regular doctor deal with this if my Igenex test comes back positive.

If that happens, hopefully regular doctor will be open-minded enough to do more than just give me a month's worth of antibiotics. He's at least open-minded enough to do my blood draw for me, so maybe there's hope.

I wont get my hopes up for a positive result on the Western Blot. I still think that I do have MS, but I do think because of the two bands of Lyme bacteria (23 and 41kda) that showed up on the WB that the MS clinic did for me, that the possibility of Lyme needs to be investigated a LOT more. Both MS and Lyme are serious enough diseases that I think they should make absolutely sure which one I have before they start poking me with needles and throwing steroids at me.

I do hope (a little bit, at least) that it's Lyme, because there's a chance that antibiotics will help (cure?) it, and that sounds a lot better than getting poked with needles every night for the rest of my life, in the hopes that one of the MS drugs will help.

[Sonsie]

I still think that I do have MS
If you're like a lot of Lyme patients I know, you do have MS -- it's part of late stage Lyme disease lots of times. These patients are all treated for Lyme disease and co-infections, not MS, so your instinct to deal with Lyme is correct. MS patients are often given steroids. Steroids are definitely harmful to people with Lyme disease. (See ILADS treatment guidelines.)

there's a chance that antibiotics will help (cure?) it
No LLMD has ever promised a cure in adults. Just management. I have met a few people who are convinced they are cured, because the antibiotics have achieved remission to the point that they don't notice their symptoms as much. For several years I have known one person who believed this. He has now changed his mind -- four years after his initial few months of treatement, he is even more sick than he was the first time around. (Neither he nor his doctor were terribly informed on LD back then, alas.) And he also has an MS diagnosis at this point, by the way, something he might have been able to avoid had things been different.

Antibiotics will make you feel better (when you are not herxing), and they will improve your quality of life. It might take you 3-4 years before you get there, it might take you just a few months. Hang in there!