Topic: Frustrated by Mainstream Doctors re Igenex Results
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
Been feeling unwell consistently since 2/8/10, but had initial stomach flu like symptoms back in mid-November '09. Most of my symptoms are ear, eye, vestibular, GI, and sweating. I have had the odd muscle cramp here and there.
Anway..as I have stated..Igenex came back positive IgM bands 23, 25, 31, 34, 83, and 93. I am told 31 and 34 indicate a longer term infection of up to a year. IgG was negative.
My primary doc told me there was no way I could have had this for 5 months + if IgG was negative. If IgM was positive it means it is a recent infection. I tried to talk to him about bands 31 and 34 being longer term. he didn't agree or didn't know this. He also told me my symptoms were "less classic." He also says in his experience he gets a lot of false positives.
So..he agrees I have it (mostly). But he does't agree I've had it long (and therefore is causing my symptoms.) GRRRRR.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
IGNORE HIM! He is wrong!! Lyme is not like other infections. I posted this to you the other day......
"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."----DR C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Leave him behind!!!!!! And disregard every single thing he said.
Your test is positive for lyme and so a lyme specialist is the logical answer. The only answer.
Also lyme is actually a "clinical" diagnosis, so anything he has said based on your test results just highlights his complete ignorance of lyme in the first place.
Run as fast as you can away from him!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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massman
Unregistered
posted
Amen ! Chuck that doc !
We have become dominant animals on two legs by learning to adapt to change.
Lyme has become a dominant bacteria by learning to adapt to change.
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posted
Agree with others, ignore doc and find an ILADS/LLMD. It's pointless to try to convince some doctors what test results mean, or don't mean, regarding Lyme.
You could use your current doc to get local lab co-infection testing, if you want. But I wouldn't use him for anything else -- he won't know how to treat anyway.
Posts: 584 | From NY | Registered: Feb 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
According to studies (see most recent Townsend Letter), greater than 96% specificity is obtained with the Western Blot if the criteria for positive is 2 or more of the starred bands positive (same criteria for IgG as for IgM). The starred bands are: 23-25, 31, 34, 39, 83-93, and 41. This means the test yields less than or equal to 4% false positives using these criteria. This test with these criteria has a sensitivity of 72%, so it may miss 28% of positive patients. Bands 31 and 34 take a year to develop after infection. They are prominent in chronic Lyme and in re-bites. They may appear very quickly in re-bites. "
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ditto - Run from this doctor, who won't know how to treat you anyway. You have a chance to do this NOW - the less time goes by, the better your chances of treating and getting rid of it. Learn from the mistakes of others (and myself).
Please don't play 'the hurry up and wait game' of sticking with dr's who really know diddly about lyme and coinfections. Endless rounds of 'let's test for this, test for that', and next thing you know, months have gone by and you still aren't on a treatment program.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Find a LLMD fast and save yourself years of misery!!!
And how in the world has that Dr determined that he gets alot of false positives??? He would not have even run a test for lyme if a patient was not complaining of symptoms or had a tick bite.
We all feel your frustration....but trust us.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all.
I see the Doc who diagnosed me on Monday and will get on Antibiotics. Not sure which ones...but I want AGRESSIVE treatment. I have also made an appointment with Dr. R in NYC (one of his staff) in 2 weeks. I would prefer Dr. P in CT as it is a bit closer / cheaper. But I"ll take what I can get. My diagnosing Doc isn't bad. She looks at whole body and alternative treatments. But isn't as experienced as Dr. R or P.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
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