posted
I saw an immunologist today and she's going to
(1) do a bunch of tests for other infections that may be lurking around, as well as (2) more specific tests to see how my immune system is functioning, by doing a complete immune system panel.
Have any of you fellow Lymies, etc., had these tests done? Did it show anything?
Thanks for any input
Elizabeth
[ 09-02-2010, 10:58 PM: Message edited by: Elizabeth S. ]
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Tell me what kind of tests you'll do. I'm interested as my immune system is shot!
Posts: 151 | From south east | Registered: May 2010
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posted
There are lots of immune system tests available.
Some docs test for immune subclasses to see if IV IgG might help. Hubby has had that test 4 times now.
Then other docs test for things like CD3 and CD4 etc etc -- this is the complement part of the immune system. Can be done as a panel -- CH50 or CH100.
Some docs check the ratio of helper cells to suppressor cells -- I think that is the C4/C8 ratio.
And then they can also test for IL 2, IL 4 etc etc -- this is the cytokine part of the immune system.
Most likely lots of people will have had the tests that were done on you. Just post your results when you get them back. As you can see hubby has had many many tests done.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks Bea I looked at what she ordered and she's doing a bunch of those, I'm hoping someone will post what abnormalities, if any, were actually found as the result of these more specific tests
Posts: 161 | From Southern United States | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would be sure to ask your LLMD about these BEFORE they are ordered.
Lyme hides from the immune system, so you may not find out what you expect and the information can't tell you much about lyme, normally. However, if your LLMD has input on the tests to be done, there may be some details of help to your treatment.
I has similar immune tests done before being diagnosed with lyme. My CD3 and CD4 were totally off but the doctor dismissed it and told me to just get more exercise. At that time, I had markers that had been recently suggested for Chronic Fatigue syndrome (in the early 90's) but the immunologist just huffed when he say those and said I just had fibromyalgia.
Now, there are better tests just be sure to get your LLMD on board so you can have the best view possible. Just know that such tests won't give you all the answers. Hopefully, you'll find a clue, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Links here offer detail on test for other chronic stealth infections.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I had the immune subclasses panel done and most of them came back low. It was before I was diagnosed with Lyme was already thinking that's what it was.
posted
Keebler, but I'm not doing it for the Lyme. I was just curious if, anyone with Lyme had them done, anyway, and if they found anything Thanks for the link, I'll ask my LLMD about them!
Hi little bit, I looked at my paper and she is ordering some subclass tests. I agree that my LLMD will probably be interested in them; just one more thing to help with my treatments, if something does show up
I figure if there's infection, something's bound to be a bit abnormal, anyway.
Posts: 161 | From Southern United States | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- "if there's infection, something's bound to be a bit abnormal, anyway."
Not necessarily with lyme. A person can be very ill with lyme and many tests come back normal. Borrelia hides from the immune system. So do some of the other stealth infections mentioned above.
Most regular doctors don't know what tests to do. I've wasted so much time, money and effort thinking that this or that doctor SHOULD be able to find something --- but only those who REALLY know ALL about lyme could help me. Lyme changes everything.
While it's true that not everything is lyme, if a doctor does not understand how lyme changes so much about the body and how it hides or alters other markers -- then it can be a waste and a false sense of security. It can also get you a "nuts" label when they find nothing wrong because they don't know how to look.
This is why a LL doctor is best to consult BEFORE ordering other tests. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree. But again, I'm getting the tests done for other reasons. The point of my post is to find out if anyone with Lyme has had more specific immune system tests, and did they show anything, in case something does come back abnormal, I'd want to know if Lyme could be the culprit. Since, as you mention repeatedly, I am also under the impression that Lyme fails to show abnormalities even if the disease is severe... Unless someone here has popped up with abnormal findings? Of course my LLMD will be informed of everything, regardless, but I'm still curious since I won't get my results for weeks.
I'm getting over 15 of them done! Posts: 161 | From Southern United States | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I may not be saying this as clearly as I'd like. The thing is that for some tests, simple adjustments can make all the difference. So, if there would be an adjustment that your LLMD would know to make before ordering the test, it could be much more informative for you. Sometimes, it's a matter of timing, or the lab being used -- but if some adjustment or shift in procedure could offer greater insight, it's so nice to know that beforehand.
Just be careful if steroids are suggested to treat an immune dysfunction. Steroids can make lyme much worse.
Good luck. I hope you find what you are looking for and that information will be a solid base for your decision process. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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And that's a good thing to mention for other people who read this thread. I've gotten steroids from this doctor before (a long while ago, almost a decade) and they were of great help to my "other" condition, but that was BEFORE I got Lyme and started picking up infections left and right.
Now, steroids would be catastrophic, so I hope she doesn't try to suggest them because I'd hate to get into an argument with such an otherwise helpful physician!
EDIT: Oh! I'm sorry, I completely skipped over the first part of your reply. I agree, again: There's had to be a lot of careful planning as far as timing for these tests (time of day, day of my flares, having to be off of all my medications, ugh). But even if my LLMD wants to redo some of them after reading the results, that would be fine. I'm lucky that these are all covered by my insurance, thank God. Thank you again for your insight and contribution the thread, Keebler
Posts: 161 | From Southern United States | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- Glad insurance covers these for you. I've never had insurance to cover anything. So, I tend to approach these things as memories of so much money I've wasted out of pocket - and "normal" tests that were used against me because of matters mentioned above. I just would not want that to happen to others.
Even with insurance, retesting may not be allowed.
I also had autoimmune inner ear disorder tests to be positive and the neurotologist wanted to put an IV steroid drip into my ears and load me up with oral steroids. I had previous disasters with steroids and, by then, had been dx with lyme so knew enough to keep steroids out of my ears and out of my body.
Good luck with your discoveries. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I also would be interested in what specific tests you are having done. I have a very low IGM...and my lyme doc has been contemplating sending me to an immunologist. I also have autoimmune isses going on right now as well.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi elizabethS ,
I have had some tests done in regard to immune function....as Bea has stated, the sub-classes look at whether or not IVIG therapy may be of benefit.
My IgG subclasses 1 AND 3 were low. My LLMD who is also infectious disease has now taken a blood draw for streptococus pn., then I received a pn. vaccine and one month later I am to repeat the blood draw...this will indicate whether or not I make antibodies, and will validate the need fro IVIG.
I have also had my complimentary immune system checked. C4a and C3a. Results from this test, according to some researchers can point to lyme...esp. the C4a result. My 1st test had extremely high C4a....in the 45,000 range. 2nd test came back in the 3500 range, and the last test that i had it was in the normal range...
Used with other markers it may indicate that lyme is in check...for instance my CD-57 went into the 200 range...
Bottom line, these tests need to be considered as a 'whole picture' in relation to TBI's. One indepent result often means little....except, perhaps the subclasses.
Hope that this is more of what you wanted, other folks results and experiences.
Oh, it's highly likely that you will have abnormal results on some of the immune system tests...Our immune systems are not working up to par, that's why we have this disease complex in the first place.....it's overwhelmed.
Good Luck!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thank you, feelfit, that was very very helpful
Is Lyme your "only" problem or did you perhaps have immune system trouble before infection?
Posts: 161 | From Southern United States | Registered: Sep 2009
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feelfit
Frequent Contributor (1K+ posts)
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posted
Not that I know of ElizabethS. I was the picture of health and a competitive athlete.....
Good luck with your tests!
Posts: 3975 | From usa | Registered: Aug 2007
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Tracy9
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Member # 7521
posted
My 15 year old son is about to get a full work up because his IGA and IGG came back low and indicate he needs IVIG. Also, he fits the picture of a child with immune disorder; sick from birth with countless ear infections, sinus infections, URI's, misses a lot of school, etc.
He is also being worked up for PANDAS. This is all initiated by his LLD, Dr. J.
He is also being tested by the immunologist to see what abx he can tolerate and what he may be allergic to as he is about to get a chest port. He had an anaphylactic reaction to Rocephin before but Dr J. wants to know if it was a true allergic reaction or an immune response reaction (I honestly have no idea what that means.)
He is trying to find the right IV med for him to get him started again.
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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I looked at what she ordered and she's doing a bunch of those, I'm hoping someone will post what abnormalities, if any, were actually found as the result of these more specific tests
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