I was recently diagnosed with Lyme Disease about a month ago. I was put on 1500mg of amoxicillin for three weeks and then 1000mg of Ceftin and I've only been on the Ceftin for about 9 days. I had the rash back in October of 2003. I thought it was a pimple and didn't think anything of it. Then my knee started hurting me. Then I had a miscarriage. I had an MRI of my knee...they found only a small amount of fluid and I went to physical therapy. Then my other knee started to hurt me and also my jaw. I was put on antibiotics for my lymphnodes in my neck being swollen back in January of this year. I was tested several times for Lyme Disease...all negative. The tests were done along with a CBC. Everything was normal. In February I had my first panic attack and I thought I was about to die. I was put on several anti-depressants and they all made me worse. I knew I wasn't depressed. A month ago I printed a picture from the web of what my bite looked like. I also took a list of my symptoms and asked my doctor if it could be Lyme. He said yes and you are going on a high dose of anti-biotics for a minimum of three weeks. (I also had an MRI of my brain in February...all normal.) So here I am a month later being on antibiotics and I have a little improvement in my knees. My neck is still killing me and so is my jaw. I am still VERY TIRED and I have terrible headaches the past few days. My lower back right above my buttocks hurts too. I feel very disoriented and my vision is blurry at times and have pressure in my eyes. I feel disconnected at times too. My questions are:
1. How long does it take for the abx to really notice a difference?
2. Have you all had these same symptoms that I mentioned above?
3. I'm so scared that I am doing to die from this. I never had the positive Lyme test and constantly worry that it's something else even though I had the bite.
4. I still have a small brown mark where the bite was. Could the tick still be in my knee?
5. Am I going to feel better?
Thanks for reading if you've made it this far. I just want my life back. I don't wnt my husband and three year old son to suffer anymore with my complaining. I want to enjoy life. I am constantly carring the xanax bottle with me because I get myslef all worked up a lot although I only take a xanax when needed about once a week.
I'd appreciate any help, insight you could give me. Oh, one more thing. I am going to see an infectious disease doctor on July 28th to see what he says. He was referred by a LLMD that couldn't get me in for months.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi, Melissa,
Welcome to Lymenet. I am so sorry you had to find us (being sick, I mean) - but this is a wonderful group of people!
Reading your message, my first thoughts are: yes, these sound like Lyme symptoms. And, second, please don't be discouraged that the tests come back negative. When you do some research about the Western Blot and Elisa, you will see how unreliable these tests really are. Lyme is a clinical diagnosis; the tests can confirm a diagnosis, but having negative results does not mean that you are free of the infection.
So you have a referral from an LLMD! That is great! The most important thing you can do is see a Lyme literate doctor.
If you have any questions about the doctor you are going to see, or if you want other referrals to LLMDs in your area who might have faster appointment waits, then check out the Finding a Doctor part of this site. I believe there are several fine LLMDs in your area.
Three weeks of antibiotics is not enough. I am not surprised to hear that you are not feeling improvement yet. Please do not worry that it must be something else very serious if you are not feeling improvement in just these few weeks. It would be typical of Lyme if you didn't feel improvement yet.
You need to be tested for the co-infections that ticks can give you (Bartonella, Erlichia, Babesia). These can be treated with antibiotics, but many doctors don't even test for them! That is another reason it is crucial to see an LLMD.
With the right treatment, you will get better. You can always come here - you will find people who understand.
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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WildCondor
Unregistered
posted
Welcome to Lymenet! I know you have alot of questions and concerns. I would like to help you. I also have some LLMD's for you to see. Forget the infectious disease doctor, they are all the worst when it comes to Lyme. Keep taking your meds and do not go off them. You must get to a LLMD soon and be checked for co-infections which could be babesia, bartonella, ehrlichia etc.
Do not expect to get better in a month. You have to be patient and treat this disease very aggressively. It is a myth that people are cured in a month. It took me a year of constant medications at strong doses to start feeling better. It is good that you are on 2 antibiotics, when you see a LLMD he will probably increase the doses and switch the meds around a bit. Dont worry about that now though. Take the xanax when you need to, the panic is a neuro lyme symptom and it will get better. Take some Mag Tab SR you can order it from walmart. Please email me as I have lots more to tell you and help to offer you.
posted
Melissa, Just wanted to let you know; I have ALL your symptoms; especially knees, back and neck...I thought I was dying...I've been on antibiotics for about one year now...you have to be on them a long time to notice a difference. But i'll tell you; a year ago I could barely walk around the mall...two days ago, I climbed Mt. Washington in New Hampshire, the highest mountain east of the mississippi...you can do this. you'll get better. do you need a good LLMD? email me privately if you do.... Sarah
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
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