posted
It seems like autoimmunity was mentioned a good bit at the recent Lyme conference. If autoimmune issues are really involved, can they improve once the infection is taken care of? I think I read that some docs (IDSA?) believe autoimmune issues are why some people don't improve after abx.
My son is being treated by an LLMD and will be on abx as long as it takes, but I just don't know what to think about the autoimmune aspect and what it means for his recovery. His main symptom is motor tics and he's been on abx for almost 3 months now with minimal improvement, which has been rather diappointing. He was undiagnosed/untreated for 2 years.
Any feedback would be appreciated.
Posts: 57 | From VA | Registered: Feb 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son was 8 when he was diagnosed. He did orals for 3 years and he is 15 now and symptoms free for over 2 years. I know at one time he had a positive ANA, but its not positive now. Keep in mind to have his eyes checked for iritis. My son had that for nearly two years, thats dormant now too and have to take him to the eye dr. every 3-6 mos. for a check up. He had no symptoms for the iritis. Dr. J. suggested he go to the opthomologist, that's how we found out - He had to have steriod drops put in his eyes twice a day for about a month and it cleared up. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Three months is a short time for treatment for Lyme.
I started treatement about 10 weeks after I got infected, took a low dose of antibiotic for 3 months, and was just beginning to see improvement at the end, but I relapsed within two days. A month later, I went to an LLMD and started proper treatment. It was 5 months into that (last month) before I saw the first sign of improvement.
Some people have recovered but did not see improvement on antibiotics for a year or more, even though it eventually worked for them.
However, Lyme & co. is complicated, so I would listen to your LLMD's advice, who probably has the experience to give you a better idea of what to expect in your son's case.
I hope he starts improving soon.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I wonder about this, too... since my son is exhibiting classic PANDAS type symptoms... could there be an autoimmune issue even after the infection is gone that will continue to cause these neurological symptoms... I don't like to think about that.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Unfortunately I think yes. Just my opinion. At least I think it is possible. I think most autoimmune disorders in my opinion originate from bacterial or viral infections.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
IMO there is no "autoimmunity", it's just the immune system attacking invaders, bacterial or viral, that scientists cannot see.
These attacks cause collateral damage to nerves and organs that may or may not be reversible.
Just my opinion...
Posts: 252 | From NJ USA | Registered: Mar 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have small fiber neuropathy, an autoimmune disease diagnosed by a skin biopsy. It is caused by Lyme and Bartonella, and it is incurable.
The treatment is IVIG. Some people get good results with IVIG treatment at stopping further damage and this is what I hoping for! I have been bedridden for three years, and extensive testing shows my Lyme disease is just about gone, or minimal, and that an autoimmune disease is what I am really dealing with, along with Bartonella.
Had I not seen a Lyme neurologist I would have never found this out.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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