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.

Many times people notice a differance with antibiotics within a few weeks but have to go through what is called a herx. You get sicker before you get better.

There are over 300 strains of Lyme disease. Everyone is differant. Some here may have had your symptoms. Some not.

A positive test only means you are making antibodies. If you have a negative test it does not mean you are Lyme free.

If you get proper treatment you will get better. But be patient. It took me 4 1/2 years to get rid of this bacteria. There is light at the end of the tunnel for many people but it takes time.

This group of folks are truely the best! (did that sound right? grammer off)

If you happen to ask a question and do not get the quick response you are looking for, you might want to do a serch. The search tool is located under post reply on the flash discussion page. You can come up with many old archives.

I am sure you will get the newbie list here, as I do not have it copied at this moment, may get back on in a bit.

Take Care,
Amanda

Sorry to hear you are having problems. Unfortunately, all the symptoms you listed could definitely be Lyme.

I have yet to get a positive Lyme test (according to CDC criteria), the tests are not very accurate. A good LLMD will treat you based on your symptoms.

I too went thru that period of "what if it's not Lyme and some other horrible illness". But I keep thinking about how I felt before I was bitten and then how bad I felt after. So I know it had to be from the tick. I never even got a rash!

I've been on antibiotics for almost ten months. It took about three months or so before I started to see a difference. I felt horrid for the first three weeks after I started treatment. This is normal. It actually means the antibiotics are working!

I still get monthly "herxes" that last for a week or so (the lyme bacteria cycles every three to four weeks) usually happens around my time of the month. But the rest of the month I am feeling pretty good. I actually have almost perfect days now!

I probably had this for a couple of years before I found out what it was, so it only makes sense that it might take at least that long to get over it.

I found out I had Babesia too. After being treated for that, I felt alot better. There are alot of tick borne diseases and you need to be tested for all of them.

I have three children and am also very tired of feeling this way and want to get my life back!

Sorry for the long reply. Everyone here is very nice and we've all been where you are in the beginning. So don't be afraid to ask any question at all. (Also, sorry to hear about the miscarriage, I've been there, it's no fun) Take Care,

Colleen

Sometimes my mind is drawing such a blank on things and do not have the mental entergy to do anything but post a question.
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Just to tell you a little about me and my family:

My mom- diagnosed almost 3 yrs ago with Lyme after about 10 ducks (dr's that do not know better) and going to the Mayo clinic all in vein. She is doing leaps and bounds better, but not all the way there yet.

Me- very symptomatic with some lyme bands showing on Igenex test.
Just started abx (antibiotics) 2 days ago and am feeling more symptoms. Amoxicillin 3000mg daily.

My 7yr old- very symptomatic with a POS>Igenex WB (Western Blot). Pediatrictian would not start her on meds. Quack! Quack!

My 13mth old- symptomatic showing bands on Igenex

All of us have a visit with a real Dr. (LLMD) in MO. at the end of August.

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.

WildCondor

I'm a newby to this site also. Am waiting to go to my first LLMD appt in mid-August. I tested positive via the Western Blot about a year ago and took Doxy briefly (10 or 14 days - can't remember which).

I've had all the symptoms you've mentioned. My low back pain often occurs on both sides, though it can migrate back and forth between one side and the other at times. The swelling in my knees, ankles, feet, face, and neck varies in how extreme it is. The swelling in my lymph nodes is not constant and hasn't to my memory actually been visible but my son developed a temporary lymph node swelling in his neck (the lymph node was HUGE - stuck out like half a golf ball) after he had his (very swollen) tonsils removed. With hindsight, I wonder if his tonsils and other immune organs were swollen and overworked from fighting Lyme and co-infections.

I also struggle (mightily) with brain fog, confusion, memory problems, clumsiness, and a feeling of disconnect. This last symptom was helped (in a hit and miss kind of way) with ongoing homeopathy. More consistently helpful for brain fog and confusion for me was avoiding wheat, gluten, sugar, dairy, oil, and some allergic foods. Since everybody is different, and the disease course is an individual thing, I'm not sure whether these things may help you. Thought though that you might feel validated to know someone else has experienced them and, through much searching and trial and error, found things that offered some level of symptom reduction.

It is my hope that you and I will both get to see an LLMD and get to feeling much better soon.