Katybug Posted October 31, 2011 Report Share Posted October 31, 2011 So, due to the Lyme, I had a C4a test in 2009 that was off the charts...59,000+ (normal is <2,900). When I shared it with the POTS doc last week, he definitely raised an eyebrow and it precipitated scripts for many many tests. As I have researched, it seems that C4a causes mast cell activation.Has anyone else had testing of their complement system (C3 or C4) and if so what if anything came of it? The research I have found clearly states a link between C3, C4, and C5 and mast cell degranulation, but it is vague about the full implication. It stops just short of saying that these proteins cause MCAD. Quote Link to comment Share on other sites More sharing options...
bensman Posted October 31, 2011 Report Share Posted October 31, 2011 Hi Katy,I have had both of those tests done recently. An allergist ordered them that I went to see about possibly having a mast cell issue, but he ended up not being totally knowledgeable about MCAS. I am not sure if he was ruling out Lyme or if it was part of looking for mast cells. Mine were both in the normal range, with the C4 being at the lowest end of normal.Since then I have been to see a mast cell specialist who said I meet the criteria for MCAS. He did look at those C3 and C4 tests, but did not mention them in our discussion.I hope someone else has some better answers!Kate Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 31, 2011 Report Share Posted October 31, 2011 Is C3D part of this testing? I had that one done and it was very elevated. I have no idea what it means and don't understand why they run tests when the results have no specific meaning??? Quote Link to comment Share on other sites More sharing options...
doggus Posted November 2, 2011 Report Share Posted November 2, 2011 I have had all the complement tests - I have zero complement 2. I also had high CD3. Quote Link to comment Share on other sites More sharing options...
issie Posted November 2, 2011 Report Share Posted November 2, 2011 What does this signifiy and how could it play into POTS? Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted November 2, 2011 Report Share Posted November 2, 2011 I had the C3 and C4 complements last year when I was being tested for rheumatological disorders. My C4 was slightly elevated and I was told that low complements are indicative of rheumatological disorders and that elevated complements mean nothing. Now I am wondering. Does anyone have more information on this. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 2, 2011 Author Report Share Posted November 2, 2011 Hi everyone,I, too, am really confused about the whole thing. I know for sure that the Lyme doc that did the test on me originally referred to it as a test for "inflammatory markers". That is backed up by what I have read. Then, I started to see the link between these proteins and mast cell degranulation. So here are some of the things I have found..odd sorts of links but you can still read the info. They seem to be reliable sources. If anyone knows anything else, I would love to hear about it. Thanks to all that responded...sounds like there may be somehting to all of this...http://books.google.com/books?id=RB6Fx20A9skC&pg=PA290&lpg=PA290&dq=C4a+and+mast+cell&source=bl&ots=DpfwXJCOtl&sig=YcfravjuTMn6NF1iULmSV10c4YA&hl=en&ei=fPiuTvvWKcSRsALUtvjnDg&sa=X&oi=book_result&ct=result&resnum=5&ved=0CDIQ6AEwBA#v=onepage&q=C4a%20and%20mast%20cell&f=falsehttp://books.google.com/books?id=beY2SZL5R_oC&pg=PA218&dq=C4a+and+mast+cell&hl=en&ei=pfmuTps1o-GxAsHCwOUO&sa=X&oi=book_result&ct=result&resnum=3&ved=0CD0Q6AEwAg#v=onepage&q=C4a%20and%20mast%20cell&f=falsehttp://books.google.com/books?id=X4X8d2SmQB0C&pg=PA126&dq=C4a+and+mast+cell&hl=en&ei=1vquTuSbGcKosALKuP3uDg&sa=X&oi=book_result&ct=result&resnum=5&ved=0CEcQ6AEwBA#v=onepage&q=C4a%20and%20mast%20cell&f=false CONFERENCE HIGHLIGHTThe Shoemaker StudiesThe innovative CFS physician Dr. Shoemaker has been quite busy of late. He presented not one or two but three clinical studies. All were pilot studies that need to be replicated using a more vigorous protocol – something Dr. Shoemaker plans to do – but all were quite successful. Two of them involved EPO or erythropoietin, the drug Dr. Hurwitz used in his unsuccessful NIH study. We turn to these first. It was unfortunate Dr. Shoemaker was not given any time to speak. EPO and the Immune SystemRitchie Shoemaker and Margaret Maizel. Treatment of elevated C4a in patients with CFS using low doses of erythropoietin safely reduces symptoms and lowers C4a: a prospective clinical trial (poster).One exercise study showed that CFS patients have increased levels of a powerful pro-inflammatory anaphylatoxic component (C4a) of the complement response after exercise. Despite its positive result this study seemed to be doomed to the dustbin of CFS research history as it has never been replicated and is now only rarely mentioned. Dr. Shoemaker certainly took notice of it, however, as he reports here that he has found that levels of the C4a protein have been commonly elevated in the 1000 CFS patients he has seen. Consider that earlier study replicated! Erythropoietin (EPO), interestingly, given its function as a blood volume enhancer, is apparently also very effective at reducing C4a levels in inflammatory diseases. This lead to Dr. Shoemaker giving 60 CFS patients 8000 units of EPO five times over 15 days and then measuring their C4a and symptom levels. The results had an interesting dichotomy; while the C4a levels in all the patients dropped, about 80% of the patients symptomatically improved while 20% did not. It turns out that the 20% who did not improve had exceptionally high C4a levels. Normal C4a levels are below 2830 ng/ml. The responders dropped their C4a levels from 8300 to near normal, about 3200 ng/ml. The non-responders initial levels were so high, about 19,500 ng/ml that even substantial improvement still left them with higher levels than the responders had at baseline (12,500 ng/ml). In short, it appeared that their C4a levels were too high for the EPO to give them relief at the dosage given. What happens after CFS patients get off a drug is almost as important as what happens when they are on it. Dr. Shoemaker found that 2/3rds of the responders relapsed while 1/3rd of them did not. This short test of EPO appeared to fix the C4a problems in the non-relapsed group - their C4a levels remained low – but did not in those who relapsed – their C4a levels zoomed up again. EPO and the BrainRitchie Shoemaker and Margaret Maizel. Treatment of CFS patients with elevated C4a using low dose erythropoietin corrects abnormalities in central nervous system metabolites and restores executive cognitive functioning (poster).EPO has neuroprotective as well as anti-inflammatory (and blood volume) properties. There are two ways it protects nerve cells, both of which are of high interest in CFS; it improves blood flows in the capillaries and it prevents nerve cell apoptosis or suicide. Dr. Shoemaker gave the same amount of EPO (5 doses of 8,000 units over two weeks) to 35 CFS patients and measured the metabolite levels in their hippocampus before and after treatment. Interestingly his initial testing found the same thing Paul Nestadt did in his MRS study (see Brain section); high lactate levels (77% of CFS patients) plus abnormal glutamate/glutamine ratios (97% of CFS patients). He found that lactate levels normalized on EPO in all cases and glutamate/glutamine ratios normalized in just over half. He believes, in common with Dr. Park, that CFS is characterized by a systemic (central nervous system) inflammation and that bringing down the inflammation was the key to the cognitive improvements seen. He did note that the cognitive problems in his patients were not resolved. Both Dr. Natelson’s and Dr. Baraniuk’s cerebrospinal fluid studies may also suggest CNS inflammation is present. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 2, 2011 Author Report Share Posted November 2, 2011 Here are some more links I have come across:http://ghr.nlm.nih.gov/gene/C4Ahttp://pathmicro.med.sc.edu/ghaffar/complement.htmhttp://www.quidel.com/products/product_detail.php?prod=172&group=2http://www.genecards.org/cgi-bin/carddisp.pl?gene=C4A Quote Link to comment Share on other sites More sharing options...
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