PLEASE HELP ... RASH WORSE after week OFF Doxy!

[KimTN]

Ok, I was dx with Lyme and possible Bart over 2 years ago after a tick bite.  Was on abx therapy for about 6 months then stopped on my own because I was tired of taking so many meds.  This Spring, I got another bite and found the engorged tick on my belly during the night.  I contacted my LLMD and he started me on high doses of Doxycycline and took it for 3.5 weeks before I started to develop a rash on my arms.  The left arm was worse from driving so I figured I would STOP the Doxy and DID.  

That was OVER a WEEK ago and I have STAYED out of the sun.  My rash is increasing WORSE and SPREADING up my arm and down to my fingers!  I went to my walk-in clinic and they wouldn't treat me ... said I needed to see the prescribing doctor of the Doxy!  They even made me an appt with him for tomorrow morning.  Problem is that is over an hour's drive for me and I am miserable NOW and SCARED!  The NP at the clinic wasn't sure it was even from the Doxy since it's gotten worse after stopping over a week ago.

I have calls into my LLMD but so far he has not offered any help!  I have even e-mailed links to pictures of my rash to him and am waiting / hoping to hear something back and SOON!  Any ideas / advice, suggestions appreciated!!!

[mojogal]

There are Lyme docs then there are LLMD 's. I found out the hard way, I would find out if your doc realizes how steroids can hurt your immune system because if he/she doesn't you need to find one who does and let them guide you. Call your doc and let us know.

[JackieCalifornia]

Normally I would agree absolutely not to take steroids with Lyme disease, but if there is a complication that can only be treated with steroids, and that complication is very serious, then that may weigh more heavily toward taking the steroids.  Will one dose of steroids between now and when you see the doc hurt?  Dunno.  Will NOT taking the steroids leave you open to serious problems with the rash?  Dunno.

It's a judgment call that your doc should make -- but the wild card here is whether your doc knows that treating Lyme with steroids is not advisable but believes your reaction is serious enough to run the risk.

Not all Lyme docs are the same.  Some believe that Lyme is an auto-immune disease and that would naturally be treated with steroids.  The more progressive docs know that Lyme is a bacterial disease to be treated with antibiotics and NOT with steroids.

So is your doc ignorant of Lyme, or has he made a reasoned decision that your reaction to doxy is serious enough to suppress your immune system a bit with one (?) dose of steroids to stop the reaction?

I don't know the answer.  What I do know is that relying on a website like this for medical advice is *not* a good approach.  

You can call your doc back and ask if he is concerned about suppressing your immune system with the short course of steroids he has given you.  You could tell him you are concerned about suppressing your immune system while having a bacterial infection (Lyme) and see what he says.

There are risks either way, and without knowing your doc's attitudes and beliefs about Lyme vs steroids, you are stuck taking a risk unless you get more information from him about his reasoning.

[KimTN]

Oh dear God, I don't know what to do!  It is my LYME doctor who is prescribing the steroid pack!  :'(

[mojogal]

Don't take steroids with Lyme . I have read that from many well known LLMD's. I was told by an LLMD who has Lyme himself that is the worse thing to do. I was told I had lupus and was given steroids and he told me it would make me worse and I appreciated it. Turns out the lupus is Lyme anyway.
Today I was at my LLMD 's office and looking for an inhaler for my mild asthma just in case and she wouldn't prescribe one with steroids in it.

[mojogal]

This looks like my Bartonella rash. If you do have Bart's , you will need a different abx and other meds possibly in addition.

[JackieCalifornia]

Glad your doc called you back!  yes, you are right taking steroids with Lyme -- it suppresses your immune system, and so lets the (bacterial) Lyme infection frolic.

It may be the lesser of two evils at this point, tho.  Personally (and NOT medically trained here!), I would probably take the steroids as a stop-gap measure till I saw the doc, given that the reaction was continuing to spread, it sounded like.  But I'm no doc, and I know others would differ on what to do.  

You sound better already -- I know how scary it all is, and part of that is the Lyme talking...I was VERY anxious before treatment, as a direct side effect of the Lyme infection -- it's quite common -- it's not just you being 'antsy.'

Stop back and let us know what happens with the doc appointment, okay?  Hang in there!