I was dx'ed with Lyme earlier this week. My symptoms started 2-3 yrs ago. I did find a tick on me went to the dr and was told to look for the bulls eye rash and if I didn't see it, I was fine. So we are pretty sure that I have been living with Lyme for 3 years now. My current primary care dr. put me on 30days of Doxycycline. I'm so terribly nauseas I swear if I wan't on this medicine I would be certain I was pregnant with morning sickness! It's AWFUL. I don't think I can handle this for a month. I have been browsing this site for about an hour now and from what I see just a month of doxy. may not be all I need. I'm feeling completely overwhelmed right now with information and I quite honestly don't know what I need to know about this whole Lyme diagnosis. I have to say though, getting an diagnoses of Lyme has been such a relief for me. I finally have an answer. Thanks for any and all advice. Posted by Lymeorsomething (Member # 16359) on :
Just try to find a lyme literate MD (LLMD). There are some notable lyme docs in NY. If lyme has been festering that long, the nickel and dime early lyme approach probably won't get you very far.
Good luck with treatment. The board here can be very helpful as well.
Posted by Tracy9 (Member # 7521) on :
I know you are overwhelmed....but when things settle down, you can make some friends over at www.lymefriends.org. We have a live chat every night starting at 8pm and a social networking site that is a nice adjunct to Lymenet.
Glad you found us here; you will find a lot of information; people will help you every step of the way.
Posted by sutherngrl (Member # 16270) on :
Be sure to take the doxy with food. That should help some with the nausea. I take mine in the middle of a meal.
Also take probiotics at least 2 hours away from antibiotics.
Posted by Carol in PA (Member # 5338) on :
Try to spend time every day reading here. You'll pick up alot of information and links.
Carol
Posted by TerryK (Member # 8552) on :
Welcome to lymenet! I'm so glad you know what's wrong with you and can get on the road to recovery.
Standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines.
I'm not sure if you know this or not but there are battles going on regarding the treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.
Besides Lyme Disease, one can get what we call co-infections from a tick. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
Your best course of action in my non professional opinion is to seek out and ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.
Terry
Posted by littlebit27 (Member # 24477) on :
A previous poster said take in with food...I didn't the first 30 days and was always nauseous. I hadn't read this yet.
During my second and current round I have taken it will for per advice from here...I'm never nauseated..but a good point the previous poster made was in the middle of a meal.
If I take it at the beginning BEFORE I have put anything in my belly I still get still. It's like the pill has super powers to beat any food there, even if there's only like a 10 second gap between the pill and the food.
Posted by Pinelady (Member # 18524) on :
I got sick no matter what. And vomit I did. I kept a pan beside the bed. A pinch of salt may take it away. I was only able to get up to
go and I needed help with that...You can do this to get your life back. Keep loads of electrolytes going in. A spoon of liquid Mag. for restful sleep. Vitamin C to help the immune system.
Always eat with the meds you are supposed to eat with. I did lots of soup. And do as much detox as you can. Keep the bowels in good working order with probiotics. And prevent yeast.
Epsom soaks helped me a lot and if you can at least once a day.
But you need someone to check water as you may not feel it to be as hot as it really is. Don't want to get burned.
Posted by janice victorov (Member # 22937) on :
I was on doxy for a while. It made me really tired and nausous for about a week. I tried it with food. Of course that helped.
Some of the fatigue and nausea went away when it got into my system.
It's good you got a diagnosis. Everyone here will tell you it's so frustrating not knowing what you have. I've been there also. I went to so many doctors including rhum, id, primary. They basically said oh you just need some meds for the anxiety. Anxiety my _________.
I had symptoms for 6-8months before diagnosis of lyme in july 2009.
Everyone here has been such a huge blessing with knowledge that has helped me. Even my llmd has learned something from me regarding info I learned here.
Lyme is frustrating to say the least. It can get worse regarding symptoms flaring and med side effects. Best advice is listen to the doctor reach out for help. Eat well limit sugar, take your vitamins and get plenty of sleep.
JKV Posted by t9im (Member # 25489) on :
I would start by reading Dr. B's guidelines.
At 3 years Doxy won't be enough. (Doxy, avoid sun and if I remember take with food (but not dairy or vitamins).
Co invefections doxy won't help with Babs or Bart.
It also isn't as good against the cyst and non cell bb.
You need a LLMD who knows more than a normal Dr. for different treatments.
May want to write down all you symptoms and see which co infection may also be involved.
Posted by TerryK (Member # 8552) on :
My dentist told me to take doxy with food and 7-up. She said it buffers the stomach or something to that effect. It does help.
Terry
Posted by Dekrator48 (Member # 18239) on :
It helps me tremendously to take the doxy in the middle of a FULL meal and to take lots of high quality probiotics at least 2 hrs away from the antibiotics.
I take my doxy with breakfast and supper and take my probiotics before bed.
You really need to find a good LLMD. Treatment with doxy alone will not likely get you well.
A LLMD will evaluate you and treat you with combination antibiotics.
You definitely need evaluated for the common coinfections that ticks also spread such as babesia, bartonella, ehrlichia, etc.
Thank you so so so much everyone! I have been told I have anxiety and panic attacks for 3years now. Very frustrating.
I have been to many specialists and have been treated for anxiety and migraines and arthritis in my hip....all of this is so clearly lyme now. I can't thank you all enough for this site.
I am calling an LLMD on Monday, the closest one to me is an hour and a half away, but it will be worth it to go. Here are my symtoms:
hip pain that radiates sometime down to my ankle
migraines (have not had one recently though))
weakness in my right arm/hand
weakness in my right leg
unusual facial sensation. Not numb, but pressure almost weakness but not paralysis...very difficult to explain.
tiredness (duh lol)
my right eyes vision is getting worse and I have some "floaters" in that eye.
forgetfulness
just a general feeling of blah...
rapid heart rate
not sure if it is related but my Vit. D level was very low and I am now on a Vit. D supplement
since starting the doxy I feel like I have been let out of a fog.
I can't explain it and I'm not sure that it is because of the doxy or because I now know what is going on with me, but I feel good, maybe it's relief, maybe it's the medicine.
I just feel like I am more with it if that makes any sense...I don't know.
I added the spaces to this post I didn't realize that it was hard for some to read with out doing that earlier, I apologize.
Posted by Beachinit (Member # 21040) on :
The fog lifting is a good sign that in fact the doxycycline is helping. I take food, doxy more food, more doxy but avoid dairy and magnesium or other mineral supplements for an hour at least before and after taking it. It took me 6 weeks to be sure it was working and amazingly I thought I felt 85% better at 12 wks. 3 months later I relapsed, went back on doxy, then on to treating co-infections which some of your symptoms: eg:
"I have been told I have anxiety and panic attacks for 3years now. Very frustrating."
Anxiety and panic make me think of Bartonella, etc. I think starting with doxycycline makes sense and then your LLMD can move you forward from there in a careful step by step fashion. Keep talking and posting, has helped many self inclusive to reduce the anxiety that Lyme and co-infections are causing.
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