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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!!!
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*
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