Hello everyone, I am new to this board and new to the whole subject of Lyme disease. I'm beginning to think it's slogan should be 'we're gonna need a bigger boat'.
Back on about June 6th I got bad neck and shoulder pain. After a clear MRI and some physical therapy it still hurt. In the midst of all this, I began getting fevers and migraines every night along with aching joints. I happened to glance behind my knee and had a very large bulls eye.
I was glad to see it was 'just' Lyme disease and knew that I needed antibiotics. I come from a very small rural wooded area and people around here are treated for Lyme often it seems. I figured I'd go on the doxycycline and all would be well. To make a long story short, I practically BEGGED for 3 weeks of doxy since after reading all this I realized 14 days wouldn't cut it.
I was done with my doxy on Friday and already I have aching joints again and mild headaches. (I've been one of those lucky few who never suffered from headaches) I'm trying not to be an alarmist but am scared that I still have it. I'm worried that my doctor who is NOT an "LLD" may just disregard my concern. I have an appt for next week if I don't get significantly worse in the interim.
I'm wondering whether anyone has any advice on how to proceed with my doc and whether I may be still 'herxing' and just over reacting? All these symptoms subsided while I was on doxy. Thanks so much for your time. I feel for all of you. I'm trying to get as educated as possible on this. Also, I'm in CT. Thank you.
Posted by Lymetoo (Member # 743) on :
First order of business.. WELCOME!! Sorry you had the need to find us, however!!
The life cycle of the lyme spirochetes is 3-5 wks... so continuing meds is important!!!
Go to a walk-in clinic if you have to. Did you take pics of the rash??? If it is still visible, take pics now.
Go to Seeking a Doctor and find an LLMD near you. Otherwise, you could be ill way longer than you think. You need to be checked for possible coinfections.
Have you tested or treated for Babesia or Ehrlichiosis? Or Bartonella for that matter? The fevers and headaches can be any of the co-infections, or lyme. But it sounds (to me) more like babs (night sweats) or ehrlichiosis (headaches/fevers). Symptoms can present themselves differently in everyone, so that's just a thought.
If you continue lyme treatment and still don't get better, perhaps you may consider looking into co-infections as a possible reason. They require different treatment methods. Even borrelia can require combos of meds, not sure what your dosage was for 3 weeks.
If you can find a LLMD like Lymetoo suggested, that might be your best bet in getting meds for a longer duration.
Good luck, it doesn't sound like you're quite done with tx yet so its best to nip it in the butt, co-infections included.
Posted by Tincup (Member # 5829) on :
Welcome to LN!
You said.. "I'm wondering whether anyone has any advice on how to proceed with my doc .."
Ever see a cartoon where the dog with big teeth gets someone by the seat of the pants and shakes them side to side while he is growling and snarling?
That's what I'd like to do with doctors in highly endemic areas that are not Lyme literate.
WHY AREN'T THEY?
That is like living on a house boat in the middle of a lake and not being able to swim!
Uggggggg!!!! AND, they get paid to be that stupid too!
Double Uggggggg!!!!
Anyhow.... sorry for the rant, but as you mentioned, we don't need more people here that are sick because of the idiot lame ducks who won't take time to learn about the fastest growing infectious disease in the country!
I am glad you are taking matters into your own hands and have learned about Lyme.
Now you need to go with your gut feeling.
A Lyme test at this point will be negatively affected by your course of antibiotics, so don't waste the money on it.
Plus, a negative test will make the duck think you don't have Lyme (and your insurer too) so it will probably do more harm than good.
I can't tell you what to do, but I suggest printing out this page and taking it with you to your next duck appointment.
You will need to stand up for yourself and be your own advocate. If this doctor won't do anything, go elsewhere.
Sorry you had to beg for meds and are still feeling poorly.
My wish is you get some satisfaction and your health back ASAP.
Posted by lou (Member # 81) on :
There is a window of opportunity in early lyme cases. No one knows exactly how long it is open, but if you don't get adequate treatment during that time, your disease will turn chronic. This you really don't want. So do everything you can to extend your treatment. Read the Burrascano guidelines if you want to have as much information as possible. They are at the url in the post above mine.
Most people who treat early lyme adequately do well, I am told.
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