posted
Hi, I'm new to the group. My daughter who is 19, was treated for CNS lyme 3 years ago. she's always had muscle weakness and I suspect she's had the disease since she was very young. She was treated with a month of oral antibiotics, then 2 months later ended up in the emergency room with a severe migraine. Nerologist did a lumber puncture and found 3 strands of lyme. (he did the test cause we have history of MS) She was given a month of rocephin. IV. Cost a fortune. We were told that she was cured. That she would always read positive, but she was cured. That was 3 years ago. Recent blood work reveled that she has high levels of Igm (I believe that's what the doc said) indicating she had acute recent infection. She's been better, still a little weak and tired...but better. MY question is, can she have high levels and not a new infection? And if this isn't a new infection, but the old one that never went away...what should the treatment be then? I can't believe she got Lyme again. No rash, no 'real' symptoms. I'm very scared for her. Any advice would help. Thanks
Posts: 24 | From Upstate NY | Registered: Apr 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Hi & welcome to LymeNet.
Elevated IgM usually indicates active infection, but not being a doctor, I cannot diagnose her. I'd suggest you try to find a Lyme-Literate MD for proper treatment - the 2 months of treatment she's had is not very likely to have completely gotten rid of the infection.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
From what I know, IGM does not necessarily mean a new acute infection, when it comes to Lyme. Every time the lyme switched forms in the body, your body is tricked into thinking it is a NEW bug, so it starts producing IGM antibodies over and over again. So the test makes it seem like an acute infection, when it could be a long term one all along.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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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."
A lot of "MS" in the family? Maybe a lot of LYME in the family. Get her to a doctor who will treat her until she is well. She was inadequately treated the first time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks, this is very helpful information! I'm afraid to treat her more because I hear that long term treatment can be toxic. she had one month oral and one month IV. The IV was hard on her. They want to put her on another bout of IV meds. Maybe longer this time. I really don't think she has 'new' lyme. I think this is all from 3 years ago and it never went away, yet, like you said, a positive is a positive. She has both high levels of IgM and IgG. But no 'real' symptoms. However, for years she's always tired easy, bad eyesight, slight numbness occasionally....I'm just not sure what to do anymore.
Posts: 24 | From Upstate NY | Registered: Apr 2011
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
In the scheme of treatment she has has very little. Lyme is more than using antibiotics. It's a very complex and extremely complicated infection complex. Viruses and protoza such as babesia come into play and many co-infections such as bartonella and erlicha.
I could go on and on, candida, heavy metal toxicity, etc. You have not mentioned that she has been on any cyst busters either, a necessary part of treatment.
I would suggest, if she does not have a lyme literate doctor who belongs to ILADS and follows Dr. Burrascanno's guidelines, that you place a post in "Seeking a Doctor".
A good Lyme literate doctor is paramount when dealing with this illness.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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