posted
I am wondering if anyone here has had their immunoglobulins tested, and recorded low results. I have a history of chronic encephalopathy among other things which hasn't adequately responded to extensive iv antibiotics.
we noticed that my total IgG scores from the past were a little below normal. a new round of testing shows the same low IgG plus a low IgM and a low-normal IgA. Total serum globulin is low and this probably reflects the overall picture. There are no med interactions. note, the scores are marginally low, not dramatically low, which is why subclass determination and B and T cell testing, antibody response, etc. need to be examined in more detail.
They failed to do subclasses or IgE even though that was the whole point of the testing, we'll do that again because the lab screwed up. {subclass determination can be important with IgG, because most IgG is of type 1, and deficiencies in the other types can be masked in overall score}.
anyway, the thought was that my immune system had a problem and this could be a major reason why I wasn't recovering adequately. I've had obnoxious chronic sinus issues and a propensity for colds, etc., but nothing horrible and life threatening like they see in dramatic agammaglobulinemias.
There seems to be a real issue here, and referral to an imunologist is in offing. Has anyone had this type of problem wrt lyme disease? and, if so, did IgG replacement help? a doc has already suggested IgG therapy regardless of what immunologist says, since he {and others} claim that sometimes it gives you the boost you need.
any comments would be appreciated.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
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posted
I have to go back and check my blood tests; but these were among the first things that my llmd checked when I started treatment. And we found that I had a well below range IgM (or IgG, don't remember off-hand, but will check and post back!).
I was told by two llmds that while this is relatively rare in the general population (about 2% may have these abnormally low ranges), that this is something they see if patients with late stage untreated TBDs more frequently. Perhaps explain why I catch every cold and flu around and get sicker longer than most folks.
I have not done anything about this in particular, except continue with lyme tx (we also found I had babesia); and my health is getting better. But I am interested in any tx you pursue; and I was told to go to an immunologist for any further evaluation. Fallon said that IVIg looked potentially useful for chronic lyme folks. Perhaps you should investigate that?
I agree, there is a real issue here. For now, I only have the energy to pursue direct lyme treatment. But would like to hear how you pursue this condition. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I also had all sorts of messed up immune system related tests. Maybe your immune system is infected! Have you had your vitamin D (1,25-D & 25-D) levels checked?
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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quote:Originally posted by Vermont_Lymie: I have to go back and check my blood tests; but these were among the first things that my llmd checked when I started treatment. And we found that I had a well below range IgM (or IgG, don't remember off-hand, but will check and post back!).
I was told by two llmds that while this is relatively rare in the general population (about 2% may have these abnormally low ranges), that this is something they see if patients with late stage untreated TBDs more frequently. Perhaps explain why I catch every cold and flu around and get sicker longer than most folks.
I have not done anything about this in particular, except continue with lyme tx (we also found I had babesia); and my health is getting better. But I am interested in any tx you pursue; and I was told to go to an immunologist for any further evaluation. Fallon said that IVIg looked potentially useful for chronic lyme folks. Perhaps you should investigate that?
I agree, there is a real issue here. For now, I only have the energy to pursue direct lyme treatment. But would like to hear how you pursue this condition. Best wishes.
yeah, it's strange. I haven't had them all checked thoroughly, but my Ig results over time are consistently subnormal. the thing about it is this, unless you get the subclasses quantified and you get tested for specific antibody response etc., you don't know much except that your immune system appears to be underfunctioning - especially given that you've been diagnosed with a bacterial infection that can be chronic.
occasionally it is seen that individuals with normal Ig results or results which are below normal but not super abnormal have impaired specific antibody response, and in the setting of a difficult to shake infection, IVIg is prescribed and can be very effective. I don't know if that is my problem, but I'm not taking any more IV antibiotics until I get it thoroughly evaluated. the thing that bugs me here is that not only is IgG low , but also IgM and IgA is low normal. so that starts to look like a trend. and then total globulins are low too.
BTW, when did fallon say that IV IgG was potentially useful?
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
This is an interesting thread. Dr. B checked my immunoglobulin levels too, (he's very thorough) and they were all, I believe, just slightly low. I believe IgG, A and M were all just slightly below reference range.
I too, am having a hard time 'kicking' lyme, despite two years of oral abx (am now on IV, and def. seeing some improvements).
But I thought that IVIg was a lifelong thing? Can one just do it for a while?
And anyway, who doesn't have a hard time kicking neuro-lyme once they've had it a few years? Isn't that just par for the course in this disease? A long treatment time, I mean?
posted
ruh roh. So the low WBC and very low IgG test results from my recent blood work may show that something is up after all?
(Daughter dear has chronic Lyme and why I am on this board; I have some suspicions about me -and why I requested some bloodwork be done).
Idiot duck - He finally did order the "Western Block" - his terminology. Although he said my other bloodwork looks fine.
Posts: 115 | From USA | Registered: May 2006
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posted
the marginally low Igs may not mean much. however, you can't depend on the IgG and IgM values alone to exclude an immune issue. remember, 2 % of the normal population has low Ig's, but a percentage of abnormals have normal Igs. it goes both ways.
what they really have to test is specific antibody response to different types of antigen, and you have to see an immunologist for this. if your antibody response is inadequate, you might benefit from Ig therapy. also, IgG subclass determination can be helpful, since IgG2 and IgG4 deficiency can be masked in overall IgG measure as most IgG is of one type, IgG1.
finally, sometimes marginally low Ig values across the board can be an indicator of an evolving serious immunodeficiency and should be closely watched.
for all of these reasons, and more, I am seeing an immunologist in near future.
posted
another thing to keep in mind is because of the very limited scope of the establishment's published research into TBDs, immunodeficiency and tendency for chronicity has not been published wrt humans. this is one of many areas that should have been researched, and normally would have been 30 years into a disease. so we don't know if there is a correlation between immunodeficiency states and treatment failure.
this is a good reason why chronic patients should have their immune systems evaluated. there's not much of a point in taking tons of abx if your body is having trouble making the right antibodies. the chicken or egg question can be posed...are some chronic patients chronic because they represent a subset who have immune problems? or are immune problems a result of the infection? etc. none of this has been studied much. nor, btw, has anyone really posed the question that chronics with immune deficiencies might not be testing CDC positive {and are thus excluded from trials} because they aren't making enough antibodies, ie, the IgG and IgM responses aren't strong enough to register on the testing.
in other words, the sickest patients might be having the hardest time obtaining diagnosis, treatment, and inclusion into clinical studies. this could be a significant issue.
the management of these diseases by the CDC and IDSA et and others has been terribly corrupt and irresponsible.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
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posted
Hi AB:
Totally agree. I would like to see an immunologist too, please keep us posted!
Fallon said that IVIGg was interesting and potentially useful for chronic lyme at the opening of the Columbia Lyme Research Center in April. It did not seem like a planned remark, I think it may have been during the Q & A period when he made that statement, or as an aside during his presentation, as something potentially useful that they might want to research.
Posts: 2557 | From home | Registered: Aug 2006
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posted
My fantastic MS neurologist - who cleared me of MS, but also knows Lyme well (but doesn't treat Lyme patients as he is focused on MS, stem cell research, etc) - thought IVIG might help me. He did say 18 months is about the right amount of time (so, not necessarily a lifetime). I'm just quoting him, I haven't researched this yet myself, but he is a wonderful, knowledgeable doc. He and my LLMD are 'discussing' this option for me. Could be neither wants to responsible for calling for such a very, very expensive treatment!!!
If this happens for me, and is effective, I will start a thread.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
I am wondering what the basis for fallon's comments are. I can imagine, theoretically, why he might say this, but he is typically pretty reserved and for him or others to say this I would have to think that they've tried it on some patients. the thing is, IVIg is expensive.
if you thought your insurance comapny freaked out at IV abx, I would imagine they'd really freak at this type of treatment especially in absence of major immunolgical findings. low immunoglobulins alone may not be enough.
18 months of IVIg could cost as much as 200 K depending on dose.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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