posted
Hi guys. In 2005 I was diagnosed with neuro lyme. I started treatement with Dr. J in PA.
Orals for 5 months, IV for 3, orals again for another year. In April of this year I stopped all meds as I couldn't figure out if my symptoms were Lyme or medicinal side effects.
The first two months off medicine I had terrible, painful arthritis. The third month I had cardiac issues. Racing, skipping, etc. The fourth month off I returned to my initial neuro symptoms. Shakey muscles, twitching all over, muscle weakness, problems swallowing.
I got back on 200mg Doxy 2x day under the care of my PCP until a lyme test returned from Igenex. It just got back (Igg) and was negative. COMPLETELY negative with the exclusion of 2 stars on band 41. (Which is an iffy band in and of itself.)
What to do? Do I come back off altogether and assume any decline is destiny?? I don't want to be a slave to this disease... especially if the symptoms are nothing more than residual.
Any advice is appreciated. prvbs31girl
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
What did the IgM show?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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timaca
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Member # 6911
posted
another question: did you ever have any bloodwork for lyme prior to starting treatment? If so, what were those results?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please list IgM results. That may be more indicative of current or long
Standing infection.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Sent away for IGG only. (Please don't say I did the wrong thing here... finances dictated one or the other- in talking to the lab they said IGG was the one I wanted because it was for chronic infection and I thought 2 years fell under chronic.)
I had a PCR/urine test fall of 2005 to diagnose. While on IV and Ketek I had meningitis twice. Bad Herx's I suppose.
My symptoms are cyclical and I feel like I know full well when the lyme is active. I only wonder if I should abandon my care to God alone as conventional medicine seems unable to treat and or rid me of this let alone diagnose it or rule it out.
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
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posted
Sorry to write this but....you should of had IgM ran also. Many chronic have a positive IgM instead of IgG.
Please read Lymetoo's post on top of front page on reading the Western Blot.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi prvrbs31girl~
I've had 13 western blots done, at various labs. My most recent, at Igenex in Jan 2007. My IgG WB was just like yours 41 positive only (and I'd had many IgG bands before on previous tests). The IgM was CDC positive for lyme.
It is unfortunate that finaces are constraining your choices at the moment. When you have some money available you might want to run an IgM.
The other thing to check into is a viral infection. In my case, I believe the lyme suppressed my immune system enough to allow the viruses to grow.
Do a search here on lymenet for "viral testing" using my member number. Read that.
Also read my story at www.hhv-6foundation.org. Click on "patients" then click on HHV-6 testing. Then click on "my viral test results". I'm Timaca there too.
Virus symptoms and lyme symptoms are the same (unfortunately).
Best wishes. God will guide you.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sixgoofykids
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posted
I can understand why you did the IgG only, but more chronic Lyme patients are IgM positive.
It sounds like you still have it. I would see an LLMD, don't abandon treatment, you can get well, it's just a complicated disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Remember that the test only tests for one strain of "Bb" There are many, many strains. And if it's mutated that may not show up. Also at different times, the tests may not be so accurate. Band 41 is not necessarily so "iffy" - it's information (I assume you did not have the vaccine).
Coinfections, too, to consider.
Also the "negative" or "positive" label is just for the CDC survel. - there really is no such thing as a negative test and it's too bad the CDC insists on this on the test.
the bands that show something - or not - just information for your LLMD.
the next step is to for the LLMD to continue to figure out what is going on and what to do to help you. Bet they've seen this before and can use what they've learned. -- but you say: " . . . if symptoms are nothing more than residual" I'll bet no educated LLMD would say "residual" - your symptoms sounds like you need to keep working with a good doctor.
I've read of many with long-term symptoms clearing with adequate treatment, even if it is longer than we think it should take.
Posts: 48021 | From Tree House | Registered: Jul 2007
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"One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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