posted
My PCP who tested for Lyme this has put me on antibiotics. I got IGG only one band reactive and IGM two bands reactive.
But today I went to a Infectious Disease MD to get a second opinion but he says I was misdiagnosed as my IGG is negative but IGM test is positive.he wants me to be off antibiotics.
Little confused of whats going on,not sure what to do next!! Did anyone experience this?
Posts: 5 | From Chantilly ,VA | Registered: Nov 2011
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posted
Your second opinion was a waste of time. Why did you go there when your PCP is treating you? Was this because you believe you must have a CDC positive test to really have the disease? False. [Don't] have too much faith in lab testing.
* edited one word *
[ 11-15-2011, 05:59 PM: Message edited by: sixgoofykids ]
Posts: 8430 | From Not available | Registered: Oct 2000
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
You have just entered the world of the Lyme Controversy. Both in diagnosis and treatment.
The IDSA MD follows the IDSA guildlines and lou is right you are wasting your time.
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
Please note a negative test can be a false negative. The CDC felt the disease was over diagnosed and over treated and set up a process that under diagnosises and under treats.
Your Western Blot done by the PCP would have excluded two specific Lyme Bands 31 and 34 of the IgG.
Good Luck many here can help.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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"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
Do you want to remain ill the rest of your life .. or go to an LLMD and get well??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
What is with the brains, or lack of with these Infectious disease doctors.
I went through 7 of these people.. The usual maybe head,stress, age (AT time 48) nothing , something but don't know,on and on and on. I even asked to be tested for things with spirochete's ,SP? sorry.
Years later, dollars later . loss of so many things. I finally this June,. decided to ask for a doc in this area ,did a western blot and was toldi n Aug,yes indeed. And Chronic.
Even since this Aug. we are on our third treatment change.
So by all means stay treated. If you want other things checked out ,do it now..But stay on treatment for this.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Infectious Disease Dr.'s are concerned with HIV and other more serious diseases. They scoff at Lyme. I really wonder if this is the start of something huge...
posted
Thank you All for your input,really after the ID visit he made me think everything was in my mind and results were false. I will follow up with my PCP for next steps as I 'm going to complete my 21 days antibiotic course.
Posts: 5 | From Chantilly ,VA | Registered: Nov 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You need a lyme lterate md (LLMD), one who is familiar with ILADS protocols (International Lyme and Associated Disease Society). You can find one at lymediseaseassociation.org.
If you post on here for seeking a doctor, people will send you some names too (private messages), although I don't know if they are ILADS trained (very important).
P.S. I went to one of the top infectious disease doctors in our state (one that doctors go to). She was clueless when it came to lyme. ID doctors can't think outside the box (just my opinion).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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quote:Originally posted by lyme_va: Thank you All for your input,really after the ID visit he made me think everything was in my mind and results were false. I will follow up with my PCP for next steps as I 'm going to complete my 21 days antibiotic course.
- That's because he doesn't want to TREAT you for Lyme. End of story.
Unless you were bitten in the past few days, 21 days treatment will not cure you. Even then, it's likely not enough.
Call an LLMD ASAP... most have long waiting lists.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
PM/////// LLMD NOW I'd start high doses of probiotics now, and never let them give you steroids of any kind.
Not for back pain, infections. some nose sprays, go lightly.... Just my opinion, but if this is early finding this , you don't even want to go through a 10th of the H___ so many of us have. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
How long have you had Lyme, or, when were you exposed to a tick bite that you remember? When did your symptoms start? If you are early stage, you've got a great chance for recovery. If it's been over 2 months, you'll need much longer treatment for sure.
Example: I started aggressive treatment with a qualified LLMD 2 months after the actual tick bites (early disseminated by this time) and It still took over 4 months to get well, and then, there's still doubt as to whether its' over for sure. Best to get on board with a qualified MD from the start unless your PCP is willing to look outside the box and study Dr. B's guidelines for treatment.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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