DO any of your Doctors run tests to Track progress

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KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 1/24/2009 9:59 PM (GMT -6)   
Do any?

Post Edited (KeepHope) : 3/8/2009 1:36:55 AM (GMT-7)


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 1/25/2009 2:45 AM (GMT -6)   
hi keepHope!

this is the "one million ...question"! I dont know of possiblilities to track the progress;
Igg in Elisa and Westernblot often remains positive for a long time (sometimes years) no matter if one got ill with lyme and no matter how bad they got ill; Igm titers often go down even it people are still severly ill with lyme (if I remember it right this is because the spirocetes leave the blood and go into tissue, muscles etc but i am not sure if i got this point right). My pharmacist has a positive Igg in Elisa and Westernblot, she says she remembers have been bitten by a tick 10 years ago but never has developed symptoms; on the other hand, not all get an Igm or the later Igg at all, this seem to depend on whether the body is able to produce antibodies.

So I think symtoms and decrease of them with/ after treatment and later on checking if patients remain symtom free is the (only ???) road we have.

greetings! dorit

Post Edited (dorit) : 1/25/2009 3:28:15 AM (GMT-7)


Maureen21
Veteran Member


Date Joined Apr 2007
Total Posts : 1599
   Posted 1/25/2009 9:00 AM (GMT -6)   
my doctor said the same thing as mentioned above by dorit. you just go by symptoms to track progress. even the cd-57 test that they use isn't accurate. some of the sickest people have the highest cd-57 numbers. just have to go by how you are feeling and unfortunately it is a long road, but he'll get there! I am off abx now for 4 1/2 months and doing really well.

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/25/2009 10:45 AM (GMT -6)   
Maureen21: How lomg were you on abx for? oral or IV? It is really encouraging to hear that you are feeling well.

Maureen21
Veteran Member


Date Joined Apr 2007
Total Posts : 1599
   Posted 1/25/2009 11:13 AM (GMT -6)   
I was on abx (oral only) for 17 months. I also did use rifing the last 9 months of that (a doug coil machine). You will get there!

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/25/2009 11:36 AM (GMT -6)   
My doc runs C4a and TGF B1 every 3 months. They should decline as treatment progresses. These are biomarkers of inflammation.

He runs CD57 at 6 months. It should generally increase over time. He said this is not as accurate due to variability day to day.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.


vibrant
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/27/2009 6:49 AM (GMT -6)   

Kitty:

This is the first time I have heard of a llmd testing for TGF beta 1 in connection w/lyme.  There is an article indicating that this is high initially in nonchronic lyme patients and may act as an anti-inflammatory agent.

Would you mind sharing your TGF beta 1 levels, what info your md has given about it, and the protocol you are on?

Your time is greatly appreciated!  Hope you are doing well.

vibrant
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/27/2009 6:51 AM (GMT -6)   
p.s.  Kitty, just noticed you posted your treatment!  Thanks.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/27/2009 8:13 AM (GMT -6)   
Hi Vibrant:

I was also initially confused about the TGF B1 levels.

I found this on cytok dot com.

"Increased production and activation of latent TGF-beta have been linked to immune defects associated with malignancy and autoimmune disorders, to susceptibility to opportunistic infection, and to the fibrotic complications associated with chronic inflammatory conditions"


It also tracks with C4a. A recent article notes that C4a and C3a are initially high in acuce Lyme, but that C4a remains high in chronic Lyme.

Also found this that says TGF ba1 is a "double edge sword":

http://www.jci.org/articles/view/118107/scanned-page/655

It wont let me cut and paste.

Here is the C4a article:

http://www.ingentaconnect.com/content/bsc/sji/2009/00000069/00000001/art00009

"C4a appears to be a valuable immunologic marker in patients with persistent symptoms of Lyme disease. "

I plan on asking my doctor more on these markers in a couple of weeks. He does not call himself an LLMD. His speciality is Rheumatology and Inflammatory Vascular Disease Specialist. Came from Yale (believe it or not!) and did research at NIH. I really like him. He looks at all angles. I have insomnia- we are checking adrenals. Have hypothyroid- we are trying to optimize my meds.

Hope the above articles help. I had some PubMed ones saved, but they didn't come across on my favorites.:((
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.

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