Band 23 only

Yes, Sarah, bark until you get help!

Your initial doctor actually had the right idea. Even the CDC says that Lyme should be diagnosed clinically. The tests are not accurate as they look for antibodies to the disease and the disease itself suppresses the immune system so that those very antibodies are not produced.

I strongly recommend that you find a Lyme Literate Doctor (LLMD). They would diagnose you clinically and get you started on treatment. If you need help finding one, start a new thread entitled, "Looking for LLMD in or near (state your nearest big city)"

Or, For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

In the meantime, please have a look at our "New to Lyme?... Start here" There are symptoms lists that you will find very familiar and a lot of other information that will be of use to you.

Again, glad you found us! Keep us posted.

I am so sorry it has been so long for you. I can't imagine. It certainly does sound like lyme. To try and explain the 2 out of 3 requirement would take a long long time. There are a great many controversies surrounding lyme and its diagnosis and treatment. It is just horrendous. It has caused me as well as many many people to go undiagnosed and thus untreated and thereby causing the disease to be chronic, affecting the whole body. I too was told my lab results were negative and never doubted or questioned the dr. because I thought lab results were definitive. They are not with lyme. Have you thought or heard about sending your blood work to Igenex which is the premier lyme lab in the country? It is expensive but you can submit to your insurance company and possibly get reimbursed. My best advice to you is to find an LLMD (lyme literate medical doctor) in your area. Just because they do not take insurance doesn't mean you won't be able to submit yourself and get reimbursed. Do not see infectious disease dr. They do not believe in proper lyme treatment, especially for chronic lyme. They will not run the proper tests for lyme and coinfections, which are extremely common. This forum as well as the internet will give you so much information but you have to do all your own research with this disease. Unfortunately lyme IS out of the mainstream. You have to be your own medical advocate. Don't give up. Keep pressing and researching. YOU are worth it !

Well, like I said I saw a Dr. who decided it was Lyme in 1998 and put me on antibiotics. Looking back at my medical records - looks like I was on them for at least 3 months -- didn't feel better. And repeated tests showed negative every time. I had given up on Lyme, until this latest blood test. But in reading the CDC guidelines, it says the IGM test is useless, unless you have a recent infection. I've been sick for 14 years, so according to them - it likely represents a false positive. This is all new for me, so bear with me on my ignorance.

I can't afford financially (or emotionally) to see another Quack Dr. (been there too many times). I do not have out of network benefits. I am just trying to get a clear picture as to whether this blood test might actually be significant and if so, I would look for a Lyme Specialist who hopefully accepts insurance.

Not trying to be difficult - just trying to understand. Thanks.

HI SarahLuke,

Welcome to our forum! I'm glad you found us!! I'm sure you will find us to be a caring, helpful and understanding group!

Please don't give up on yourself. Keep on asking those questions here! You can also use our search function so that you can read for yourself how other have dealt with their symptoms and confusing situations. And most of this will be confusing for a while.

In my non-medical opinion, (although I have been at this for a while) your IgG response from 1998 shows that you should have been diagnosed with chronic Lyme at that time - it's no wonder you didn't feel any batter after only 3 months of abx! It's also quite possible that you weren't on a strong enough dose of abx to even start to treat the infection(s) that you had.

As far as meeting anyone's criteria for a Lyme Disease diagnosis, think about this- if a woman has all of the symptoms of being pregnant, she takes a sonogram and it shows a foot, then it's safe to say she is pregnant, right? No one needs to see the entire baby to know that she is pregnant. That is what is happening in your blood tests for Lyme. The "skin" of the bacteria has been seen. There shouldn't be any doubt that the insides of the bacteria are there as well.

The reason your blood tests started coming back as negative is because the bacteria's first order of business is to survive. So it doesn't stay in your blood stream very long and only returns to the blood stream at certain intervals to start it's life cycle all over again.

Once the bacteria leaves your blood stream, it moves to your tissues, organs, joints, eyes and even the brain. Once there, the bacteria can change into another form, the cyst form, which is not only an protective layer (a lot of abx can't get past it) it acts like a 'cloaking device' as well. The body doesn't even know it's there, so it won't try to attack it. This is how these infections spread to every part of our bodies if left untreated.

Please, you need to be evaluated by a doctor that actually studies and treats Lyme and other tick borne infections and those that have them.

Hi SarahLuke and welcome!

I agree with Traveler that your testing from 1998 indicates that you should have been diagnosed with chronic lyme.  I also believe that lyme is a clinical diagnosis and that in due time we will have better and more accurate testing.

I just wanted to add that most of the time it is important where you had your testing done. 

IgeneX is more accurate compared to Quest, Labcorp, etc. because when Quest, Labcorp, etc. make their lyme probes they used rabbit antigens from 2 strains of Lyme.

Igenex uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme.

Also, when a western blot is done there is an acidic gel that is used to separate out the bands.

Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands.

You can order a free test kit from IgeneX though you will need a doctor's signature for the blood work.

www.IgeneX.com

Hope this helps,

Denise

I had band 23 come out positive in 2007, but at that time the doctor said it wasn't enough to confirm a diagnosis. But since I was symptomatic (low grade fever and aching swollen knees) and had been at our country house in the woods that summer, he gave me Doxy to take for 2 weeks. The fever went away after 5 days and the knee pain got better. BUT, soon afterward, I got bi-lateral pain in the upper shoulders and backs of my thighs. I could barely lift my arms to undress. My sedimentation rate was 40. I was put on prednisone and felt better. I still have the pains on and off and am down to 3 mg. prednisone and an anti-inflammatory med. The diagnosis is: Polymyalgia Rhuematica. Now my sed rate is about 17 and CRP.0.2
But whenever we try to reduce the meds further, the pain increases. I already had Mixed Connective Tissue disease for many years prior to getting the Lyme disease band 23 positive result in 2007. Still, I wonder if Lyme can cause secondary inflammatory diseases, such as Polymyalgia?
Today, the doctor decided to retest me for the band 23 antibody. He said he has done lots of research about it over the weekend and looked back at my records and saw the positive for band 23. Said antibiotic treatment should be around 2 months. But since my recent blood work came out good regarding inflammation, he's not too sure it will be positive, so we will learn the results tomorrow or the day after.

Hey Lander! I was blessed...I was positive through LabCorps (amazing)! There are a couple of speciality labs that now accept insurance too! I would love to test for the coinfections. I tested negative but I know I have babesia and bart.

Cool name too! Blessings to you!

Band 23 is very often a false positive after 4 weeks. IgGs at your point would be the test you would look at. I had a positive 23 also, which is quite common. This is NOT a positive Lyme test! I was convinced I had Lyme, but I did NOT. I had an LLMD tell me that I did, but I found out the true cause of my symptoms. I am hoping to help others out there that are put on unnecessary antibiotics. If you have a negative ELISA and a negative Western Blot IgG, you do NOT have Lyme Disease!