Hey all. I am fairly new to the board and had some questions about my Western Blot results. I was fomrally diagnosed with Lyme back in Aug. 2008. Although it was suspected in 2004 my WB came back with only 2 bands present. I treated with Doxycyclene in 2008 for 30 days. The symptoms got better then came back and worsened over the next year. I went to see an ID Dr. in 2009 and had a ELISA and spinal tap which were both positive for Lyme antibodies. I was treated for 28 days on IV Rocephin. Well, I got better then worse. My Dr. insisted it was gone and took me off the Rocephin. I have alot of physical and cognitive problems and I know it is from lyme, so I ordered myself a Western Blot. If anyione can help me translate the results, they are below: IGM: 18 kda + 23-25 kda + 28 kda ++ 31 kda + 34 kda + 39 kda IND 41 kda ++ 45 kda + 83-93 kda +
IGG 31 kda IND 34 kda IND 39 kda + 41 kda ++ 58 kda ++
I am trying to decide my next course of action since I feel so bad every day. Any help/opinions would be appreciated.
Posted by LightAtTheEnd (Member # 24065) on :
Goodness. I haven't seen anybody report a Western Blot with that many positive bands before. (I haven't been around here that long, though, so maybe it's more common than I think.)
Other than that, your story sounds similar to many other Lyme patients who have been undertreated and dismissed by their doctors when they were still sick.
Many people who definitely have Lyme have a negative Western Blot, or only show a few positive or IND bands.
It sounds like you were treated according to the IDSA guidelines, which are insufficient for treating chronic Lyme.
Given your symptoms, and your positive Elisa and spinal tap, you need to consult a Lyme Literate doctor (LLMD) as soon as possible.
If you post in the "Seeking a Doctor" folder "Seeking LLMD in North Carolina" then somebody will help you find one.
An LLMD will treat you until you are well, not just for X number of days.
Posted by Tomiss (Member # 24493) on :
I did post a few weeks ago and did get a list of Dr.'s in my area. For financial reasons I think I may try another ID Dr. that was reccomended my the military ( Im retired Army). I just hope the ID is a waste of time again.
Posted by Pinelady (Member # 18524) on :
Wow thats Lyme. If you have had it since 04, you probably have a lot more than just Lyme. The docs
seem to think the worst patients have the worst response on the WB so maybe the treatments kept it
latent. Try not to let them do this to you again. Many have to treat for over a year. Prayers for a
easy road.
Posted by Tomiss (Member # 24493) on :
Does anyone know if any of those bands suggest a co-infection?
Posted by Hoosiers51 (Member # 15759) on :
You can't tell if you have a coinfection from the Western Blot. You need separate tests for that.
Your Western Blot looks like Lyme to me. Good luck with treatment!
Posted by LightAtTheEnd (Member # 24065) on :
Most ID docs are a waste of time and money if you have Lyme.
Don't let them give you steroids. Those lower your immune system and make Lyme much worse.
Posted by feelfit (Member # 12770) on :
Tomiss,
I'm going to be bold here and tell you that seeing another ID doctor will be a very STUPID move!
Your WB results look a lot like mine. I was undiagnosed for 18 years and have been treating since NOV. 2007. You've not only these + WB results, but Bb was found in your CFS and your ELISA was positive!
Holy moley! Go to an ID doctor and you'll probably get another 28 days of Rocephin and be told that you're cured and any lingering symptoms are 'Post Lyme Syndrome"
Especially a military ID doctor. Listen to what others have said: see a Lyme literate doctor. You should not have any problem with ins. covering treatment as you have TONS of supportive labs.
The longer you wait, the more you'll lose time wise. Treatment may take years...if left untreated or under treated, you will probably be told that you have Parkinsons, alzheimers, MS, or ALS at some point.
As far as co-infections go, most Lyme doctors are treating for these to cover bases....Bb rarely travels alone.
Best of luck to you, Feelfit
Posted by sixgoofykids (Member # 11141) on :
ID doc would be a waste of time. You need to go to a doctor you know will treat you until it's gone. If you local ID doc were known to treat Lyme, someone here would know about it. Word gets around the Lyme community who treats and who does not treat.
If it's free, then it's just a waste of time so you could try it.
LLMD's don't come cheap, that's for sure. Most of us have to travel (I traveled from Ohio to NY). Many of us pay out of pocket. Unfortunately, that's how it is with Lyme.
Check out www.underourskin.com The movie trailer explains a lot, the movie explains even more.
Posted by Lymetoo (Member # 743) on :
I agree that seeing another ID duck (oh, I mean dr) would be a very bad move. You are obviously ill with Lyme... now.. what else do you have?
Better get checked for babesia, ehrlichia, and bartonella at the very least.
The only way I'd see an ID dr is IF he/she is also an LLMD, a lyme literate MD.