Lyme Disease Support Group

I have not been diagnosed with lyme disease but I got bit by a tick in March 2009. I was always raised to pull it off and flush it, not ever knowing about lyme disease.

About 4 weeks later a bulls eye rash appeared in the exact same spot. I saw the Dr. about a week later and she said it was ringworm. Ever since that tick bite I have continuously had problems from:

Headaches- Dr. gave me medicine which made me sleep 17 hours staright, then felt like I had a hangover.

Excessive sleep and fatigue- Dr. said it was depression tried numerous anti-depresants which only made it worse.

Shoulder shooting pain and swelling- Dr. said it was from a birth defect and gave me anti-inflammatory.

An odd looking bruise on the top of my foot that appeared, been there for about a year now- Dr. said it was a busted vein

Mild shooting pain and numbness (tingling) through arms, hands, and feet- Not treated

Severe knee pain and swelling- Dr. said he would refer me to a RA dr

Body aches- Not treated

Tremors- Not treated

Back pain- Not Treated

I had a blood test May 2010 for lyme but came back negative. My Dr. acts like I'm a moron when I tell him I had the bulls eye rash and blows it off, I wish I had taken a picture now.

My biggest concern is that I'm making myself sick because I'm worrying too much about it. Is it really all in my head, I mean I'm no doctor and if he says there's nothing wrong, then what?

Seriously, if the rash is a give away sign of lyme disease why won't the dr. just listen? I have done a little research and most say because it's so controversial.

Some say that these so called llmd dr's are just trying to get rich off the poor sick people?

I cry just about every day because most days I can't even get up to help my kids get ready for school anymore. Sometimes I can't sleep and stay up all night just because I'm scared that I won't wake up!

TLC,

Welcome to the forum. I feel so bad for you, and so mad at all those doctors! I think any LLMD is going to tell you based on your obvious symptoms ( and especially with a bullseye rash! ) that you have Lyme.

You have been through the same run around that so many of us have. Get yourself to a LLMD. It is the only way you will be taken seriously. Betty on this forum can get you a list of them in your area.

I know how hard the sleep related stuff can be. And you know, the bruise you talk about, I had that appear under my big toenail in the first year I had Lyme, along with a bombardment of other symptoms. It was a large bluish spot that finally grew out with the toenail after a long time. Then it came back again later. No doc could explain it.

I also had it in my eye. This is such a strange disease!

You have a big hug from me. And a big prayer too! I will especially focus on your getting good sleep. We need that most.

VicMac

Thank you for taking time to listen and help me! I have felt so alone with this for a long time because no one understands!

Sometimes I feel like this is a bad dream that I can't wake up from! It's kind of a relief that I am not the only one but I feel bad that so many people have endured this stupid disease!

I agree with VicMac, sounds damn familiar to me. A suggestion, only because this happened to me. I would ask to see copy of test. If it was Elisa, in my opinion, throw it in the trash. If it was western blot and had any bands even if listed as indeterminate post results here and let folks here take a look. How I learned of my dilemma. First bite '06 told WB neg but had 2 ind. bands but just kept getting sicker second bite Apr 'o9and noone would do WB. Rheumy did Second WB (different lab) Sept '10 same 2 bands but positive. Your doc will no doubt say doesn't mean a thing but you are entitled to copy of test results and if it is WB (though Elisa is the first done and usually neg) it will make you feel better to go at this with determination and maybe put your mind at ease to a degree.

I have had only one test taken and I have no idea how to read it what it means or if it was just the Elisa or wb?

It looks like everything is completely normal the tests that I did have. I don't understand these bands that you talk about though!

tlc,

Walkersraven is right, have someone else look at your test results. The people on this forum can tell you alot about them if you post them here!

Or go and get new tests done. I am still going to have to do this myself for Lyme and the coinfections too. Make sure to test for coinfections if you do more testing with an LLMD.

It is good that you are here and have a place to vent and find support. PM me anytime.

When I hear you talk, I remember how I felt in the beginning. You can get through the worst of this and improve!

Hang in there!

Hugs!

Hi and Welcome to a wonderfully supportive forum that has the most caring and helpful members!

I am so glad I found this forum, tlc, and I welcome you, too.

I was most recently diagnosed after years of receiving no help from numerous physicians....a familiar story.

There are many threads here and articles on the web that will explain the testing to you.

And yes, it can be overwhelming, so just take your time. In time, you will understand.

When my new doctor first brought up the possibility of Lyme, I became somewhat obssessed and I want to read everything, know everything in a day!

Try to find and read an article or two a day, so as not to overwhelm.

If I can find a resource for you that explains testing (in our own terms, so we can understand!) I will come back and post it for you.

Otherwise, you certainly came to the right place to have your quesetions answered, as there are SO many here with far more knowledge than I have to offer.

However, I did want to welcome you and let you know that many here feel your pain and know what you are going through.

I wish you the very best!

Here is one link to start with:

http://www.mdjunction.com/lyme-disease/articles/dr-cs-- western-blot-explanation---lyme-facts

Hi,

I'm pretty new here too, just wanted to say I found this excerpt from wikipedia pretty interesting.

"The serological laboratory tests most widely available and employed are the Western blot and ELISA. A two-tiered protocol is recommended by the CDC: the sensitive ELISA test is performed first, and if it is positive or equivocal then the more specific Western blot is run.[82]

The reliability of testing in diagnosis remains controversial,[3] however studies show the Western blot IgM has a specificity of 94–96% for patients with clinical symptoms of early Lyme disease.[83][84]

The initial ELISA test has a sensitivity of about 70%, and in two tiered testing the overall sensitivity is only 64% although this rises to 100% in the subset of people with disseminated symptoms, such as arthritis.[85]

However, ELISA testing is typically done against region specific epitopes and may report a false negative if the patient has been infected with Borrelia from another region than that in which they are tested.[86]

Erroneous test results have been widely reported in both early and late stages of the disease. These errors can be caused by several factors, including antibody cross-reactions from other infections including Epstein-Barr virus and cytomegalovirus,[87] as well as herpes simplex virus.[88]

The overall rate of false positives is low, only about 1 to 3%, in comparison to a false negative rate of up to 36% using two tiered testing.[85]"

If you can find out what tests you had this my shed some light on things.

For example it seems to explain why my MELISA tests came back positive and my IgG and IgM appear to be negative - although I've not had my full breakdown of results yet so it may not be completely negative.

Hope that helps a bit.

Post edited by: UKRobert, at: 12/20/2010 11:39 AM

I know exactly how you feel! I knew something was wrong with me for months-I had massive headaches that woke me up out of a deep sleep and a fever I couldn't get rid of. I kept going to doctors telling them something was wrong, but no one believed me. Finally, I went to the walk in clinic on a weekend because I thought I had an ear infection and the doctor there happened to specialize in Lyme's! I don't know how long I could've gone on like that because everything was getting worse. I couldn't take care of my son and we missed out on some of our usual routines. I am a long way from getting better, but I feel better more days than not. Good luck.