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PLEASE HELP ... RASH WORSE after week OFF Doxy!
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!!!
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!!!
It may feel like you haven't made any progress, but actually you have, because you've learned some things along the way, found ways to find a new doc, just gained more experience to wrestle Lyme into submission.
Take it easy on yourself -- you're doing fine. Keep us posted.
Take it easy on yourself -- you're doing fine. Keep us posted.
Not to be a downer, but keep your antennae up when seeing a neurologist. They are right at the top of the list (with infectious disease docs) in not believing in Lyme as anything serious.
Doxy in the summer is okay; it's doxy in the *sun* that's a problem.
Good luck.
Doxy in the summer is okay; it's doxy in the *sun* that's a problem.
Good luck.
Bummer about your doc. That is always disappointing. We count on doctors to know what they are doing and to heal us, or at least treat us appropriately.
Definitely find a new one. Sounds like you probably have a full case of Lyme going. Be sure to get tested for Bartonella, too. (b.henselae)
Definitely find a new one. Sounds like you probably have a full case of Lyme going. Be sure to get tested for Bartonella, too. (b.henselae)
So sorry Kim , I hope you can find a good doc. It seems like the bad reaction could be from the steroids but not being a medical person, it's just a feeling. Keep us posted on how you are doing, I am one of those people that are allergic to a lot of meds however with Lyme we have used benedryl and it works luckily, at least so far.
Thank you all! Just to update ... was put on the Medrol pack to clear up the Doxy rash from Hell!!! Finally all but gone but now I feel TERRIBLE. Muscle and joint aches, and the most worrysome is weakness in my hips and legs again. (The WORST symptom I had 2 years ago when I was diagnosed through IGENEX for Lyme) Trying to get a referral from my GP to see a Neurologist. Have no more faith in my LLMD since he rushed me out when looking at my rash ... and since he didn't know to NOT put me on Doxy in the SUMMER or NOT to put me on a steroid if I've possibly still got Lyme. :'(
No need to just live with it when there is the great possibility of a cure. New doc seems like the best idea.
It is possible you weren't cured from the first infection and your body has been fighting a low grade infection ever since. It is also possible you were reinfected recently. Or, perhaps you got another tick borne disease like Bartonella or Anaplasmosis that has resulted in a flare up of the Lyme.
If a tick has already transferred its Lyme spirochetes to a person, that tick would then test negative. Testing a tick is not a definitive test of whether you got anything from that tick.
You don't have to just live with it. Usually it gets worse over time. I also encourage you to find another doc. Travel out of state if you have to. (I remember a couple other stories of people in TN struggling to find a doc to diagnose and treat Lyme.)
Keep us posted!
If a tick has already transferred its Lyme spirochetes to a person, that tick would then test negative. Testing a tick is not a definitive test of whether you got anything from that tick.
You don't have to just live with it. Usually it gets worse over time. I also encourage you to find another doc. Travel out of state if you have to. (I remember a couple other stories of people in TN struggling to find a doc to diagnose and treat Lyme.)
Keep us posted!
Time to find a new doc, I would think.
Send an email to
contact [at] ILADS [dot] org
and tell them what geographic area you are in and can reasonably travel to and they can send you names of ILADS docs. That's no guarantee the docs are any good, but it's a first step.
I just searched on google for
tennessee lyme disease doctors
and got a ton of hits. One of them is a facebook page for Lyme Disease Association of Tennessee -- no guarantee they know any more than we do here, but it's a start.
Like everything else Lyme-related, finding a doc is not easy. It's because Lyme is still a developing disease, and because mainstream medicine is slow to figure it out. Lucky us, modern-day pioneers. /sarc/
Send an email to
contact [at] ILADS [dot] org
and tell them what geographic area you are in and can reasonably travel to and they can send you names of ILADS docs. That's no guarantee the docs are any good, but it's a first step.
I just searched on google for
tennessee lyme disease doctors
and got a ton of hits. One of them is a facebook page for Lyme Disease Association of Tennessee -- no guarantee they know any more than we do here, but it's a start.
Like everything else Lyme-related, finding a doc is not easy. It's because Lyme is still a developing disease, and because mainstream medicine is slow to figure it out. Lucky us, modern-day pioneers. /sarc/
One thing I had failed to mention to my LLMD is that I had been bitten by THREE different ticks within the same two weeks!
The one that was attached and engorged on my belly during the night, is the only one that I thought to KEEP, and therefore had it tested!
The other two were only on me briefly but they did bite (that's how I knew they were there) and I removed them quickly!
Who knows if they released something into my body just with that first bite or what other ticks I got that same week and never found!??
All I know is that 2.5 years ago, I had a very positive IGENEX reult (as is in my signature) and I had the EXACT freaky symptoms this time.
I had a strange and sudden bruise pop up immediately down my finger after breaking a carrot stick in half for my horse.
Then I had the nodule pop up on my wrist, the only other one I have EVER had and exactly as I had the first time I had LYme 2 years ago.
My LLMD saw the nodule and I told him about the bruising and that is when he tested my blood again but because his test came came negative, he has dimissed it!
Of course he is also going by the fact that the tick I sent in to IGENEX came back negative but as I stated above, I failed to mention the other ticks! *sigh*
Thankfully, my rash finally shows some improvement this morning after the second days of Medrol!
Thank you ALL so much for your replies to this thread. I guess at this point, I will see how I feel after completing the Medrol!
However, I still have pains in my hands and feet and muscles twitches that have never stopped from the first infection of 2.5 years ago. I have really just learned to live with them and quit complaining!
The one that was attached and engorged on my belly during the night, is the only one that I thought to KEEP, and therefore had it tested!
The other two were only on me briefly but they did bite (that's how I knew they were there) and I removed them quickly!
Who knows if they released something into my body just with that first bite or what other ticks I got that same week and never found!??
All I know is that 2.5 years ago, I had a very positive IGENEX reult (as is in my signature) and I had the EXACT freaky symptoms this time.
I had a strange and sudden bruise pop up immediately down my finger after breaking a carrot stick in half for my horse.
Then I had the nodule pop up on my wrist, the only other one I have EVER had and exactly as I had the first time I had LYme 2 years ago.
My LLMD saw the nodule and I told him about the bruising and that is when he tested my blood again but because his test came came negative, he has dimissed it!
Of course he is also going by the fact that the tick I sent in to IGENEX came back negative but as I stated above, I failed to mention the other ticks! *sigh*
Thankfully, my rash finally shows some improvement this morning after the second days of Medrol!
Thank you ALL so much for your replies to this thread. I guess at this point, I will see how I feel after completing the Medrol!
However, I still have pains in my hands and feet and muscles twitches that have never stopped from the first infection of 2.5 years ago. I have really just learned to live with them and quit complaining!
Sorry, but that doc doesn't seem too great. I am no medical professional but I have several friend that are and we are 99% sure the rash is from a co-infection. When he says he sees a rash from doxy all the time , that shows me that you should find another doctor. Sorry, I know it's a pain. You can google yahoo support groups in your state and also Facebook may have one in your state and you can ask them for a doctor if all else fails? So sorry, it is hard enough , finding another doctor is a pain.
Saw my Lyme doctor and in about 2 seconds while still standing he said that my rash was a typical Doxy rash and he "sees them all the time" and that was it. Said make an appointment for a follow-up if I want to talk about my recent lab results and that the tick was "negative" for Lyme. When I asked why then did I have the same symptoms again as after the first bite 2.5 years ago, he simply said,... "I have no idea!" So .... I guess I'm done with the long drives to Franklin to see this Lyme "specialist" ... the ONLY one in TN. Can we say, "burnout"? Yea, being the only "Lyme Literate" Doctor in TN and having a rash (no pun intended) of new cases of Lyme Disease along with its very vast and puzzling co-infections, loses its initial attraction after a couple of years I suppose. Much easier to go back to the "easy stuff". *sigh*
Please don't be overly worried and upset. This disease is a pain and takes lots of hard work and positive thinking, for me at least, if I get upset all my symptoms go into over drive and I feel worse. Hang in there!
I didn't mean anaphylaxis from the steroids but from the allergic reaction itself! Hopefully now that the steroid has been in me a few hours that is
no longer a risk? But, I do have a dry tickle / cough now! *sigh* So, here I am sitting up again at my computer instead of lying in bed afraid that
I won't wake up in the morning. :(
no longer a risk? But, I do have a dry tickle / cough now! *sigh* So, here I am sitting up again at my computer instead of lying in bed afraid that
I won't wake up in the morning. :(
Well, as long as your sense of humor is in one piece, you're halfway home. Good for you. :)
I don't know that you would get anaphylaxis from taking the steroids ... I was thinking more of a flare up of the underlying Lyme infection. Lyme is bacterial, and your immune system is busy swatting it down, but by taking steroids, the immune system is suppressed, and that means your immune system isn't able to do its full job against the Lyme bacteria, so you might get a rise in Lyme symptoms.
Hang in there! The Benadryl may be calming if nothing else. :) Let us know how you do and what the doc says, okay?
I don't know that you would get anaphylaxis from taking the steroids ... I was thinking more of a flare up of the underlying Lyme infection. Lyme is bacterial, and your immune system is busy swatting it down, but by taking steroids, the immune system is suppressed, and that means your immune system isn't able to do its full job against the Lyme bacteria, so you might get a rise in Lyme symptoms.
Hang in there! The Benadryl may be calming if nothing else. :) Let us know how you do and what the doc says, okay?
Don't worry, I am hysterical over this enough for ALL of us! ;) All joking aside, I am truly concerned but I've already taken the 1st dose of 6 pills.
I also took a Benadryl capsule so maybe that will keep me from a bad anaphylactic reaction!!!???
I also took a Benadryl capsule so maybe that will keep me from a bad anaphylactic reaction!!!???
You don't sound hysterical at all .... and I am on the same page with you about going for it with the steroids *if* the doc feels it's needed in this particular situation. That's the wild card.
PS sorry if I sound hysterical, I almost got in big trouble by taking steroids and the word freaks me out. If the doc knows how it affects the immune system but feels it is needed in your case then go for it. My situation was being surrounded by docs who didn't believe in Lyme and winding up in the hospital half dead on a respirator from doctors who didn't know what they were doing.
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.
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.
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.
Oh dear God, I don't know what to do! It is my LYME doctor who is prescribing the steroid pack! :'(
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.
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.
This looks like my Bartonella rash. If you do have Bart's , you will need a different abx and other meds possibly in addition.
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!
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!
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