posted
My doctor's nurse called me to inform the the doctor said I tested positive for Lyme.
He suspects I have chronic Lyme because of my symptoms and I have a tick history.
I received my test results in the mail and they are all saying negative.
I have started treatment already. I am I missing something?
Anyones experience would be so appreciated.
Thanks so much!!!
IFA, B BURGDORFERI G/M/A <1:40 TITER NEGATIVE
I GENIX- IGG- WESTERN BLOT
18 -
22 -
**23-25 -
28 -
30 +
**31 -
**34 -
**39 IND
**41 +
45 -
58-
66 -
73 -
** 83-93 -
IGENIX IGM WESTERN BLOT
18 +
22 -
**23-25 -
28 -
30 -
**31 IND
**34 -
**39 -
**41 +
45 -
58-
66 -
73 -
** 83-93 -
Posts: 20 | From WhoVille | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think you have enough specific bands to say yes.
Your immune system is likely not detecting the Bb
and not making enough antibodies. This is why some
have to do a challenge to prove it if you do not
have a LLMD and continue to get sicker.
Congratulations on your quest and wish you the best of luck in treatment.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
At the top of the Medical Questions page is a post called "Dr. C's Western Blot Explanation."
Dr. C explains that if you have symptoms of lyme and have certain bands positive on the Western Blot, you have a positive test. He says that an IND (indeterminate) is a weak positive.
Here is a quote from that post:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.. "
You have positives on bands 18, 30, 31, 39, and 41. That's why your lyme doc is calling it a positive test.
Read the entire post and you will understand more fully.
Posts: 9931 | From Maryland | Registered: Dec 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Your right. i am confused.... too. Your results are not what they consider Postive in IGENEX or CDC considerations. Yes though they do say there are clinical diagnosis as well and maybe even just for some doctors less than the IGENEX or CDC criteria or different criteria. I just got my IGENEX test back and am positive but CDC negative. But on another test last year CDC Positive but one band on this test is not showing positive when once ones. I hope that a good sign.
But probably just variablility of testing and timing...
this disease is a tough one.
Good Luck to you
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I have a question about lab results as well. Lyme's(Acute) was confirmed with western blot about 6 wks ago. I had 5 bands test positive. I should also say that the first Lyme's serology came back positive, and that's why it was confirmed with western blot. I started on doxy for about 2 wks, and my symptoms kept getting worse, plus I was very nauseated. So my doctor decided to go ahead with IV Rocephin x 28days. About 3 wks in, he decided to do some labs, including Lyme's serology This time it came back negative. A week later, I have now completed the 28 days of IV antibiotics. I'm feeling better as far as fatigue. However, I am starting to have blurry vision and joint pain. I have had fevers x 3 months. My question is this: Do I have Lyme's disease or not. Now my doctor is not sure if I do. I am really confused. However, every symptom I am having, I am reading is a symptom of Lyme's. Any input would be wonderful!! Thanks!
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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posted
Limeaid, hi, usually one waits two weeks before doing another test.
Usually one treats for two months after all symtoms are gone.
How long have you had this infection? Years? Then it might take more than a year of treatment.
Is your doctor on the list of LLMD's?
When your symptoms get worse, this is actually a good sign, it is a herxheimers reaction, known to happen with spirochete infections like syphilis and borrelia.
Read all about herx here on the forum, do some searches.
Some do not experience them, but generally most people do have them.
Are you taking the probiotics and vitamins and omega-3 and are on the diet? (no sugar, no alcohol, and it is recommended to go completely gluten-free)?
Posts: 366 | From Europe | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome, limeaid. Well, now that you have lyme disease (no "s" on the end, by the way), you need to educate yourself on it. You have it all right. The positive test is the proof. And, as long as you still have the symptoms of the disease, you still have it. That's logical, isn't it?
Lyme disease is in the middle of a huge medical controversy. One side says it is rare and is easily cured by no more than 28 days of antibiotics.
I myself could not get more than 30 days of antibiotics from my primary care doctor when I was diagnosed about 8 years ago.
This rule or guideline is put out by the Infectious Disease Society of America (IDSA) which is the medical group that is supposed to be the experts on lyme disease.
Chances are, your doctor is among this group of doctors and that's why you have been treated the way you have and the doctor is now thinking you don't have lyme disease anymore.
The other side of the controversy is people like those on this board, for whom 30 days of antibiotics did not work. (My symptoms came back as soon as I stopped the meds.)
Doctors that believe lyme disease is common and is often difficult to treat have formed a society called International Lyme and Associated Diseases Society (ILADS). ILADS doctors treat patients for as long as it takes for their symptoms to go away. They also test all lyme patients for co-infections--infections that are commonly found in lyme patients--such as babesiosis, bartonella, etc.
It is nearly universal that the tick bite gives people more than just lyme disease. Until all these diseases are treated, the patient cannot get well. It turns out that I had babesiosis and bartonella along with lyme disease. It takes different meds to get rid of each disease.
So, I recommend you find a doctor through a lyme support group (left side of this page) or start your own new post in our Seeking a Doctor forum and tell us what states you are willing to travel to for a good lyme doctor. This way, you will get an ILADS doctor who knows that you still have lyme disease and will treat you until all of your symptoms are gone.
Here are the Dr. Joseph Burrascano lyme disease treatment guidelines.
This is the best document you can read to start your education on lyme disease.
You can also look at other documents and videos on the ILADS website.
Also, a Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
It is great that you found LymeNet so soon in your lyme journey. Now, find a good doctor and get your health back. I recommend you get a doctor who follows the Burrascano Guidelines. Ask when you call the doctor's office. If he doesn't follow Burrascano, call another doctor.
I went through a number of so-called lyme doctors (wasted 2 years taking their medications) until I found one who followed the Burrascano Guidelines. The Burrascano-type doctor got me well.
It has now been over 4 years since I completed my treatment and I am still symptom-free, enjoying my life. It's the same life I had before lyme disease.
That is what I wish for you. Keep posting and asking questions. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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