I've read before (I think on this forum) that the lupus rash on the face is caused by Lyme co-infections like Bartonella or Babesia. Recently though I suspected my 7 months on Minocycline could have been the cause, and after a quick Google, there is a strong connection between Minocycline and similar oral antibiotics and "drug-induced lupus".
Does anyone have any firm facts on this - ie. is it co-infection or drug-induced ? I was on Mino for about 7 months, but that ended about half a year ago. I'm getting spots in exactly the lupus butterfly rash layout, including occasional hard bumps under the skin on the cheek bones or left/right of the nose. I'm 95% sure this didn't happen before the Mino, and the original tick bite was about 3 years ago. So I'm thinking it's drug-induced, but studies of drug-induced lupus say that the rash tends to disappear with the withdrawal of the antibiotic, so I'm trying to work out what's going on and what I can do about it (admittedly it's not by any means full-blown lupus).
Any info/experiences would be much appreciated - Hugh
Posts: 6 | From UK | Registered: Aug 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi hughels, and welcome.
I personally have never heard of Lyme causing a typical Lupus rash before, so I'm sorry I can't be any help with that.
What I have run into is information regarding Drug-Induced Lupus, and I have read that sometimes it won't even show up until many months AFTER you stopped taking the med.
Hope that helps, Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Something and dont think its the drug but bart or babs and lyme still in you?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I had a bright red shiny lupus rash on my face at one point during treatment, too, which was biopsied and showed autoimmune activity typical of either lupus or dermatomyositis.
For me, this was part of an autoimmune illness that was triggered by the Lyme itself.
Have you had an ANA done to measure your autoimmune reactivity? Have you had your genetic HLA type tested? If you have the HLA-DR 4 genetic marker then you are susceptible to autoimmunity with your Lyme and will have more trouble responding to antibiotics. DOes your rash worsen in the sun or do you get sick in the sun?
I have considered the possibility of tetracycline- induced autoimmunity also (although most of the literature is on minocycline doing this). However, it is now a few years after I was on it, and I still get very sick in the sun and have other lupus (or Lyme) symptoms, after considerable treatment (years).
My daughter and I are both resigned to having some sort of permanent autoimmune problem. MY ANA is currently 1:5120 (normal is 1:40). The real question is whether the Lyme bacteria is still around (meaning more antibiotics) or, instead, if the Lyme bacteria are curtailed or gone, and an autoimmune illness that was originally triggered by the infection, now continues without the germload still being a problem.
Of course, if you were on minocycline, it is possible that you have a short-term lupus-like problem that will fade once off the meds.
Time will tell. There is probably no way for anyone to tell you, but you can have your ANA and other autoimmune tests done to get a fuller picture. That might mean seeing a rheumatologist. Just play along and get the tests : don't try to convince them you have Lyme unless you have positive testing, and don't try to convince them of chronic Lyme and long-term antibiotics, either!
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posted
I DID get the butterfly rash on my face BEFORE ever dxd or treated for LD or anything else.
I had full Lupus investigation at the time (among many others, of course!), no other indicators of Lupus ever showed up - that's through present - about 3 years since onset of all of this.
So, I know that doesn't help with the drug-induced question, but just wanted to say I had malar rash apparently due to TBDs only.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Thanks for all your comments and suggestions. I don't have an LLMD, and haven't had any of the tests for a few years. Even then I only had the basics, and I wasn't even tested for co-infections.
Reading this forum, I should be thankful my symptoms aren't worse. It was always mainly a neuro-Lyme problem for me, and thankfully I think my brain's adapted around the worst of it.
I'll give it some time, and hope the lupus rash was caused by the minocycline and goes away gradually. It's too difficult to go down a treatment route without an LLMD, and when the diagnosis is so murky.
Thanks again for your comments - Hugh
Posts: 6 | From UK | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I also get a butterfly rash on my face during different periods of this illness. Lupus has always come back negative.
I don't believe I ever did mino and for me there is no connection with or without abx.
Anyone have anything on the bart or babs connection to this malar rash?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Chalk me up to another one that was constantly walking around with the butterfly rash before my Lyme diagnosis.
Other doctors would see it and test me to Lupus and then even when it was negative they would send me to a Rheumotologist.
Around and around I went. After the lyme diagnosis and during treatment, I would have a flair of it pretty badly every now and then, but at this point, I haven't had one in many months, so hopefully I finally have it out of my system.
I don't know which co-infection it may be caused from but I was treated for both bart and babs and don't recall when I suddenly noticed it just wasn't coming back anymore.
It's one of those things that you notice it when it's there, but when it's gone, you can often forget about it until you realize it's been quite a while.
Hopefully you can kick yours out of your system as well.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If you have that rash...
Check out Parvo B-19 virus.
Also called "slapped cheek disease" and I believe 5th's disease.
This coinfection is being noted in a number of Lyme patients.
posted
Lupus is not the only disease that causes a butterfly rash. Most quacks believe it is though I have had a bunch of Lupus tests come back negative.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
No, sunlight not involved. Because I had the rash two weeks ago and believe me we rarely see the sun in Jan here.
In fact thinking back, I don't believe I've ever had it during summer months?????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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