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Post treatment symptoms?

I was duagnosed in seot w lymes. About 1 month after symptoms. Took 21 days dixy. ER doc did give me prednisone prior diagnosis.
My symptoms have returned along with a terrible rash. Rash resolves w steroid but comes back first day off the drug.
Has anyone else here had post treatment symptoms?
Anyone with a rash months after treatment?
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Avatar universal
A quick thought, tho perhaps already done:  put a ruler next to the red spot and take a cellphone foto of it, and keep taking photos if there seems to be a trend or changes.  That way you have a timeline with evidence for a future doc to see.  Never know when it might help!  Take care --
Helpful - 0
428506 tn?1296557399
I'm not very excited.

There seems to be a movement towards establishing Post Lyme *Syndrome.*  A syndrome is a collection of symptoms.  By classifying post Lyme as a syndrome, I believe it is an effort to acknowledge symptoms exist, but to then offer no treatment.  So imagine this conversation:

You:  Doc, I took 21 days of doxy, but I still have Lyme symptoms.  Is there any chance I still have an active infection and could benefit from extended treatment?

Doc:  Nope.  You are cured.  Now you just have post Lyme syndrome.  Now go away and never come back, even if you continue to suffer.

Admittedly, I have a flare for the dramatic, but you get the idea:  Defining post Lyme syndrome is just a way for mainstream medicine to acknowledge that not all Lyme patients feel better after short courses of antibiotics, but at the same time, to still deny that any treatment is warranted.

Helpful - 0
1 Comments
Well said, Wonko.  What I don't understand is why the nonLLMDs are so stubborn and have such closed minds.  
Avatar universal
Here's another link that might help:
     http://www.chroniclymedisease.com/llmd-referrals
It says they have a referral list of MDs who understand Lyme.
Helpful - 0
5 Comments
Again thank you for your concern. This had been a long road and its only been 5 months!
What is important is that you are fighting back!  I remember well how I felt before I was diagnosed and treated, and it takes much energy and focus to keep moving ahead (or even to get out of bed in the morning sometimes).  

You already show that determination, and it will carry you through.  If calling and dealing with the MDs' offices is too much to focus on, ask a friend or relative to help -- if they are nearby, then perhaps they could sit with your while they make calls, so you can give input on what your preferences are for appointments, location, etc.  

Sending you all good thoughts and wishes! --
Thank you again! Why does it have to be so hard to get help?
I have noticed that the CDC is doing over 20 studies on Lymes and "Post treatment Lymes Disease" Promising???
Promising?  Maybe.  But I'm not holding my breath.  The CDC is full of docs who think they already know all there is to know about Lyme and its co-infections, and with that attitude, they don't have any reason to think bigger thoughts.  In my view, this is a huge scandal and a good reason NOT to turn over the whole medical community to be run by the US govt.  .....   The title of the CDC study you mention looks like a giveaway to their position:  'post Lyme disease' usually means that the docs who use this phrase think that it's *normal* to continue to have Lyme symptoms even after treatment is completed.  These docs ignore the logic that if you still have symptoms, then you still are infected.  Instead, the CDC and its followers believe that anyone treated for Lyme who still has symptoms are just an over-reaction of the patient's immune system and NOT the consequence of a continuing Lyme infection.  You'll see the phrase 'post-Lyme syndrome' ... and that's what the CDC believes, that Lyme is never really cured.   --- From my own experience and from what I read, ILADS has the better approach:  that is, continuing symptoms mean you're still ill and need treatment.  I'm not medically trained ... but I also don't have Lyme anymore, thanks to the ILADS approach to kill the Lyme.
Avatar universal
MNLyme.org

That is the website for what appears to be a substantial organization focused on Lyme disease.  Call them or ask a friend to call them for you -- they may well be able to help you find a Lyme specialist.  If you are not up to making the call, ask a friend to do it.  ...

... but the most important thing is:  do not give up!  I can tell from your posts that you are strong-minded, and that will carry you through.  

Let us know how you do -- we're always here.  
Helpful - 0
1 Comments
Thank you!
Avatar universal
2 steroid shots this week. Rash nearly gone then returned in 6 days! Suppose to last 6-8 weeks! GP doesnt think I need the infectious disease doc since she says its not lymes related! Never had this prior lymes! Dermatologist just keros pushing more steriods.
HELP!!
Helpful - 0
5 Comments
Steroids are medicine that suppresses your immune system, so that your body cannot fight infections.  It sounds like the steroids may have suppressed your immune system for a while, and now that the steroids are gone, the infection comes back.  

I am not medically trained, so do not rely on me ... but personally I would find a Lyme specialist for an evaluation of your illness and what treatment is appropriate.  Sending you many good wishes -- !
I dont know of any lymes specialist here in Minnesota. I saw an infectious disease doc when I was diagnosed in September. I think I should go back to her? My symptoms have never entirely went away. Pain is nowhere near as bad as it was in the beginning but I still have pain, crawling feelings under my skin and cognitive issues.
And now this crazy rash! Not like normal eczema, which I have. Like a sunburn but raised and it burns.
And now this crazy rash! Not like normal eczema, which I have. Like a sunburn but raised and it burns.
I just searched online for

---    LLMD Minnesota   ---

and got quite a few links.  Try that search and see what you find.
Avatar universal
"Rash resolves w steroid but comes back first day off the drug."  I'm not a doctor, but I have read that the rash goes away after taking steroids because your immune system is stopped by the steroids, so it only looks like you are being healed.  If you are not also getting antibiotic treatment, then the medicine may not be helping at all.  Please consider seeing a new Lyme doctor for another opinion --
Helpful - 0
1 Comments
My doctor gave me steroid cream for my "eczema."   It made my rash and bump lessen some while taking it but my bump has come and gone over the last 2 years... never fully healing.  The rash it about the size of a quarter with a defined bump in the middle of it.  I do not have dry skin at all... the eczema is the exact location I was bitten and pulled a tick off me.  The rash was not there before the bite and hasn't not been there since being bitten.    

Avatar universal
I had taken pred in december last year and after I quit the drug I broke out in painful hives all over. I still have scars from them. It was strange and the doctor didn't know what to tell me but the problem lasted a long time.

It looked like cystic acne but it was everywhere, arms, scalp, ears. The hives never came to any head but they faded gradually leaving hard scar tissue. They would start bright red and extremely painful.

I read similar things from people online about pred. Strange reactions AFTER going off the drug.  
Helpful - 0
2 Comments
Do you have chronic lymes? My symptoms never went away entirely. Now this crazy rash. I know the steroids just supress the immune system but normally if I had hives it cleared w steroids and did not return. This stuff comes back with a vengeance!!
I tested positive for it this month but I suspect I have had it a year or more at least. probably got in WI in 2013. Idk if the rash is lyme or some people are just allergic like that.
Avatar universal
Sorry about my miss spelling! Eye sight is shot!
Helpful - 0
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