Sorry this is going to be such a long post, as my situation is complicated. After a year of being basically incapacitated and visits to over 40 doctors in every speciality (seems to be the typical story here), I finally have seen an LLMD and gotten my Igenex Results back as follows:
IFA, B. Burgdorferi 1:80 POSITIVE
CD-57 78 BORDERLINE
Lyme IGM Western Blot IGENEX POSITIVE CDC POSITIVE
**31 ++ **34 IND **39 + **41 + **83-93 +
Lyme IGG Western Blot IGENEX NEGATIVE CDC NEGATIVE
**31 IND **39 IND **41 +++
However, I am still doubting my Lyme diagnosis for various reasons and need reassurance that treating for Lyme is the right thing to do.
My IGM test looks pretty positive, however, I am under the impression that this signifies a RECENT infection. The only exposure I remember was well in the past, although I was put on an antibiotic challenge prior to my testing (could this cause a positive IGM?) I do not live in a particularly endemic area (Illinois) and the only tick bite I remember was when I was about 6 years old, although it stayed attached for at least 24-36 hours before I noticed (I am 24 now). Not sure what kind of tick it was b/c no attention was paid at the time it was removed (I guess Lyme wasn't well-known back in the early 90s).
Also, I did not have ANY bands come back on my western blot from Quest. I know that this test is not worth the paper it is written on, but I would have expected to at least have one band positive on this test.
I did have some strange medical problems throughout my teenage years, however, nothing really got bad enough to halt my life. This included chest pain and a very high heart rate upon exertion, lightheaded/fainting episodes, severe anxiety/infrequent panic attacks (didn't know what they were at the time), severe mood swings/overemotional, stinging back pain between shoulder blades, migraines, stabbing pain in lower back, heat intolerance (not all of these at the same time). I had a mystery illness when I was 14 where I laid sick in bed for about a month and half over the summer. Symptoms during this episode included severe fatigue/malaise, constipation, spine pain, lower abdominal pain, and anxiety/derealization. I somehow recovered completely from this episode by the end of the summer.
Since I started college, I still suffered from psychological problems such as anxiety/panic attacks and severe mood swings/rage, so I was placed on an antidepressant. This past year I all of a sudden had a flare of symptoms, starting with a pain in my upper left abdomen (uncomfortable laying in bed), followed shortly by insomnia (never had these before, could sleep for DAYS before if I wanted) dizziness, ears popping, profuse sweating in the air conditioning, and EXTREME panic attacks that sometimes lasted entire days (I read an article by a Lyme psychiatrist that Lyme panic attacks often last longer than the usual 10-30 minutes). I was originally led to believe that the antidepressant was causing these symptoms after being on it for 4 years, but I have been off it for 6 months now and continue to have total insomnia (do not sleep for days sometimes), anxiety, numb emotions, fatigue, headaches, depersonalization, tingling/numbness in body parts, eye problems, absent reflex in right knee, hair falling out, loss of appetite, pale fingernails, heat/exercise intolerance, and many other weird miscellaneous symptoms that all other doctors have written off as "in my head". Now, I am not sure if these symptoms are due to the withdrawal from the antidepressant, or a Lyme flare, or both.
I guess I just need reassurance that being on the antibiotics is worth the risk to get my life back. It seems like not a lot of people talk about the psychological/neurological symptoms a whole lot, and these are what have put my life on hold. I do not have joint pain, nor any cognitive/memory dysfunctions, which is what really makes me doubtful.
My LLMD has made a clinical diagnosis, however, I am not sure if he doesn't diagnose everyone who comes through his door with weird symptoms with Lyme. He only listened to like 3 of my symptoms before he announced that I had Lyme, and then ran the Igenex tests upon my request. His intentions seemed good, but the approach seemed a bit shady for me. He is now recommending Fry Labs to find any other co-infections (these were all negative at Igenex).
Any comments on my test results/situation would be appreciated.
Thanks KJ
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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posted
One more thing...I was ON antibiotics when I had the IGENEX testing done. Does anyone know if thiss could this of affected the western blot or co-infection tests?
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I am not a doctor but if that is not the MOST POSITIVE test result, then I don't know what! Most folks like my self don't even get an CDC positive!
My daughter was diagnosed with just one positive band on the LapCorp WB. As far as her LLMD is concerned band 39 and a list of symptoms is enough for her to make the diagnosis. And it looks like you have tons of symptoms as well.
To treat or not to treat is a personal choice. Most of us are too sick so we don't have a choice but to treat. I also know someone w/ a CDC positive but has very few minor symptoms. He is NOT treating at all. So it all depends.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
[QUOTE]Originally posted by kj15: [QB] Hi everyone,
Sorry this is going to be such a long post, as my situation is complicated. After a year of being basically incapacitated and visits to over 40 doctors in every speciality (seems to be the typical story here), I finally have seen an LLMD and gotten my Igenex Results back as follows:
IFA, B. Burgdorferi 1:80 POSITIVE
CD-57 78 BORDERLINE
Lyme IGM Western Blot IGENEX POSITIVE CDC POSITIVE
**31 ++ **34 IND **39 + **41 + **83-93 +
Lyme IGG Western Blot IGENEX NEGATIVE CDC NEGATIVE
**31 IND **39 IND **41 +++
However, I am still doubting my Lyme diagnosis for various reasons and need reassurance that treating for Lyme is the right thing to do.
My IGM test looks pretty positive, however, I am under the impression that this signifies a RECENT infection. The only exposure I remember was well in the past, although I was put on an antibiotic challenge prior to my testing (could this cause a positive IGM?)
I do not live in a particularly endemic area (Illinois) and the only tick bite I remember was when I was about 6 years old, although it stayed attached for at least 24-36 hours before I noticed (I am 24 now).
Not sure what kind of tick it was b/c no attention was paid at the time it was removed (I guess Lyme wasn't well-known back in the early 90s).
Also, I did not have ANY bands come back on my western blot from Quest. I know that this test is not worth the paper it is written on, but I would have expected to at least have one band positive on this test.
I did have some strange medical problems throughout my teenage years, however, nothing really got bad enough to halt my life. This included chest pain and a very high heart rate upon exertion, lightheaded/fainting episodes,
severe anxiety/infrequent panic attacks (didn't know what they were at the time), severe mood swings/overemotional, stinging back pain between shoulder blades, migraines, stabbing pain in lower back, heat intolerance (not all of these at the same time).
I had a mystery illness when I was 14 where I laid sick in bed for about a month and half over the summer. Symptoms during this episode included severe fatigue/malaise, constipation, spine pain, lower abdominal pain, and anxiety/derealization. I somehow recovered completely from this episode by the end of the summer.
Since I started college, I still suffered from psychological problems such as anxiety/panic attacks and severe mood swings/rage, so I was placed on an antidepressant.
This past year I all of a sudden had a flare of symptoms, starting with a pain in my upper left abdomen (uncomfortable laying in bed), followed shortly by insomnia (never had these before, could sleep for DAYS before if I wanted)
dizziness, ears popping, profuse sweating in the air conditioning, and EXTREME panic attacks that sometimes lasted entire days (I read an article by a Lyme psychiatrist that Lyme panic attacks often last longer than the usual 10-30 minutes).
I was originally led to believe that the antidepressant was causing these symptoms after being on it for 4 years, but I have been off it for 6 months now and continue to have total insomnia (do not sleep for days sometimes),
anxiety, numb emotions, fatigue, headaches, depersonalization, tingling/numbness in body parts, eye problems, absent reflex in right knee, hair falling out, loss of appetite, pale fingernails, heat/exercise intolerance,
and many other weird miscellaneous symptoms that all other doctors have written off as "in my head". Now, I am not sure if these symptoms are due to the withdrawal from the antidepressant, or a Lyme flare, or both.
I guess I just need reassurance that being on the antibiotics is worth the risk to get my life back. It seems like not a lot of people talk about the psychological/neurological symptoms a whole lot, and these are what have put my life on hold.
I do not have joint pain, nor any cognitive/memory dysfunctions, which is what really makes me doubtful.
My LLMD has made a clinical diagnosis, however, I am not sure if he doesn't diagnose everyone who comes through his door with weird symptoms with Lyme. He only listened to like 3 of my symptoms before he announced that I had Lyme, and then ran the Igenex tests upon my request.
His intentions seemed good, but the approach seemed a bit shady for me. He is now recommending Fry Labs to find any other co-infections (these were all negative at Igenex).
Any comments on my test results/situation would be appreciated.
Since Lyme is a relapsing illness, its symptoms come and go. Its symptoms also vary in all of us, so we don't all get all the same symptoms. What you are describing above are Lyme symptoms, so...it sounds like you are going to be working with a good Lyme doctor. The best part of this is, as you find treatment that works for you, you will feel better.
Also, Lyme is everywhere, even where you are from. So everyone needs to take precautions.
Posts: 13116 | From San Francisco | Registered: May 2006
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Our oldest son (now 14) nearly died of complications from Lyme/Co-infections 2 years ago. The battle has been lenghthy. One of my initial skepticisms was with Igenex Labs.
His first LabCorp test was negative so traditional doctors dismissed his symptoms. A few weeks later we found a LLMD through a friend. The Igenex test came back positive but Quest came back negative. This was very confusing as far as the blood work was concerned.
We knew he was sick, however, and he began treatment for Lyme. 6 months later he tested positive on Elisa and WB through the VA health dept.
Our oldest daughter (16) began declining rapidly. Sent a blood sample to Igenex and one to Quest on the same day; same blood draw. Igenex came back positive; Quest negative. After starting antibiotics for two weeks..Quest came back CDC positive.
There are 6 members in my family, 4 of which have Lyme and friends. I can only speak from my personal experience and not some random data on the Internet. In our case, Igenex proved to be accurate and Quest seemed to miss all of our cases. So instead of questioning Igenex, I think traditional doctors need to begin questioning the lack of sensitivity of other labs.
It has been proven by many that the testing is flawed. It's like this...if you stick a bucket in a stream and find no fish in the bucket, it doesn't mean there are no fish in the stream. It means that particular time you weren't able to catch any. In your case, this test seems to indicate exposure to Lyme. Many on this board were not so fortunate and were misdiagnosed far too long.
No lab is 100%. In our family's case, Igenex hit it right the first time. If you are symptomatic, you should treat the triggers no matter what it is.
My husband's symptoms have all been cognitive; no pain in joints or muscles. He used to be very methodical about things and always finished tasks. He began forgetting simple things and seemed in a fog. Mood swings became the norm but were definitely not his norm. He had bladder issues that needed treatment. He started antibiotics and much of what he was experiencing has dissipated. He didn't realize how bad he was until the fog lifted.
All of us have IGM positives. All of us were exposed long before treatment so you would expect an IGG response. It doesn't work that way with any of us.
Hope this helps a little.
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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posted
I have experienced very similar symptoms and have similar test results. I am also CDC/IGeneX positive on IgM only, with a few bands on IgG but not enough for a positive. I can not recall EVER having a tick bite, and I live in Canada. I could copy and paste your paragraph on "strange medical problems" as a teenager. Yup, exactly the same for me, every single symptom. I remember terrible, unrelenting back pain, chest pain, anxiety attacks, etc. I am not currently sick, but my 3 children are. In fact, I only researched lyme and had myself tested because I was trying to figure out what is wrong with my 7 year old son who has been very ill, and is incapacitated by psychological problems. He missed most of grade 2 last year. All 3 of my boys have tested positive for lyme, and all 3 have more classic symptoms, like joint pain and brain fog, that I have not experienced.
I don't know if you have children, or plan to some day, but I wish more than anything, that I had known about lyme and received treatment before I unknowingly passed it on to my kids. How I wish I could go back in time...
Posts: 41 | From Ontario | Registered: Apr 2011
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posted
Interesting discussion - want to add that I am IgG positive and IgM negative, after 25 years, so looks like it can go either way re IgM/IgG positive.
And even though IGeneX wants two definite bands for a positive IgG, kj's test looks kinda positive to me.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I took the paragraphs below from an article on the Western Blot test and Lyme disease. It says that a positive IgM test (which you had) may indicate both recent infection and chronic infection:
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies. Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Posts: 18 | From Tennessee | Registered: Jun 2011
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posted
Thanks to everyone who has written in so far. It is helping to put me at ease that I am pursuing the right thing.
I didn't know that I didn't have to have the joint pain or cognitive/memory problems. I am so sick I really have no other options at this point. I really wish I would have gotten tested and treated sooner.
Perhaps it is a blessing, however, that I came back CDC positive on the first try as it seems like many of you didn't get this. I heard that the band 39 is probably one of the most specific for Lyme?
I just hope if I really have had it this long that it can be cured. I'm hoping the antibiotics I have been placed on will at least help take the edge off soon so I can have a little bit of comfort.
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Are you seeing the doctor in Lake in the Hills? I hope things start to turn around for you.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hopkins published a study in 2005 that summed it up as 75% of those with Lyme disease were missed using the standard tests. That does not include the ones that never get tested, the 9 out of 10 not reported, etc.
In Maryland, in one year, over $3 MILLION dollars was spent on these bad tests alone. That is why they are still on the market. Someone is making BIG bucks.
This might help. It lists the WB bands and some of the findings.
39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.
83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band.
AND... keep in mind...
Lyme disease patients may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes.
An indeterminate number of patients with late or chronic Lyme disease are simply seronegative for unknown reasons.
And yes, taking antibiotics can affect the tests.
Here is an article about panic attacks and other neuro/psych symptoms, that was just published.
Here is additional info about Lyme-related mental health issues. There are 17 sub-pages listed at the bottom of this page. You should find them helpful.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
---
and then there is this:
"Band 83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
Band 93: The DNA or genetic material of Borrelia burgdorferi."
---
PS.. Robin.. for some reason your link is not working. (??)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
No, I am not seeing a doctor in Illinois. I had to go up to Milwaukee, WI (about 2 hours from here) to see the closest reputable LLMD I could find.
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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posted
The county health dept. called today about my result. I guess Igenex really does report the CDC positives! The lady on the phone though was so naive...she told me to make sure to finish my 30 days of antibiotics to get better LOL! I know I have probably had this for years, but she didn't seem to understand that concept.
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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