Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by kermit frogsquire, May 19, 2014.
OK, SO IS MY HEART GOING TO EXPLODE TOMORROW???
I think it helps give you more evidence of an ME diagnosis.
How to treat? got no idea??? keep persuing antivirals??
Thanks so much for your comments. Regarding Emma's long Q-T interval, I wondered whether it was a true long Q-T or whether a U wave has got mixed up in there making it a pseudo-long Q-T by making the T look longer than it really is. I had a look at my ECG again and I seem to have really big U waves too, but in mine they seem to be mixed up in the P wave rather than the T wave.
Have you got any experience with U waves or what they may mean? Obviously I didn't have bradycardia or hypothermia when I had the ECG's
Hi Ema, I wondered, have you ever had high dose IVIG (immunoglobulins) rather than antivirals as that would cover immune/autoimmune disease? I mean, if cidofovir didn't work there aren't any better antivirals than that at present - not until CMX001 anyway.
I also take Azith which may account for my longer QT interval. Or maybe I shouldn't take Azith with a longer QT interval?
I do take Hizentra. 10g weekly, which is not a high high dose as used in autoimmune disorders but not a low dose either. However this is temporarily on pause until I either get back into the patient assistance program or can get Medicare to consent to cover it. Not an easy feat given the cost. But I do find it helpful.
Wow, 10g of Hirzentra - that is a whopping 50ml infusion isn't it? How long does it take to get that amount subcutaneous?
It's really interesting that it is helping. I have a friend who had 30grams IVIG. She said it really helped, but the benefit only lasted 3 months.
Is it easy to get immunoglobulin in the USA from a doctor? I am finding it next to impossible to get it in the UK, even if I offer to pay! I don't suppose anyone knows a doctor who is willing to prescribe IVIG in the UK if self-funding?
Regarding azithromycin, the risk of a dangerous or fatal heart rhythm is very very small, but it is definitely real. I guess with your ECG results you may have a higher than normal risk from it.
It is a 50 mL infusion. It takes about 90 minutes with a pump. I infuse into three sites in my leg usually.
It's not easy at all to get IgG replacement in the USA unless you meet some very specific criteria or are able to mount a successful appeal. But many people who need it go without because the insurance company are very strict given the cost.
Have you had your IgG levels tested? Are you low?
My IgG levels are fine 12.5 g/l. (ref 8-16). I've never had subclasses but with total IgG like that they would ignore lowish subclasses anyway. I am however IgA deficient and have raised IgM. I do have low C3 complement during a severe flare though indicating possible immune mechanisms, plus it drops by about 40% from baseline so it is a significant fall.
It seems some doctors in the USA are willing to prescribe IVIG if the patient is self-funding.
It may be true that some doctors would be willing to prescribe IVIG if self funding, but the reality is that hardly anyone could afford it. It could easily run over $100,000 a year, if not more, depending on the dose.
I'm really hopeful that the cost will come down once they get the synthetic IgG replacement approved. The cost of harvesting and purifying plasma really is cost prohibitive.
With selective IgA deficiency, it might be worth having subclasses run and a vaccine challenge if you have lots of infections and/or autoimmune disease that is unresponsive to prophylactic antibiotics etc. There is some evidence for IVIG in those cases. It sounds like an uphill battle though. I'm sure it would be here too.
I've read a few people mentioning a vaccine challenge - is that the same as "functional antibody levels" to Tetanus, Haemophilus influenzae b, and Pneumococcal? Or is a vaccine challenge a test to a completely new vaccine that your body has not been exposed to, and then they measure antibodies to that?
My Pneumococcal IgG total was >384, the reference range was 20-50, but I've never had a Pneumococcal vaccine. Does anyone know what this test means as my levels are way over the threshold that the test can even calibrate for?
Could that mean a chronic infection, for instance? Or could it be something like rheumatic fever where antibodies against streptococcus attack the body after the infection has gone? Or is it completely normal to have antibody levels to Pneumococcal that are too high to calibrate?
The Pneumococcal antibody test is suppose to measure antibody responses to polysaccharides, could high levels be related to overexposure of polysaccharides from GI bacteria?
Incidentally by Tetanus and Haemophilus influenzae b antibody levels are also quite high despite not having been vaccinated - (I did have a tetanus shot about 20 years ago). However, on the other side of the coin, I have zero antibodies to EBV and CMV despite an almost certain exposure.
Would be good if anyone could shed some light. Thanks
PS IVIG for a year at 30g a month would cost about £20,000 in the UK, cheaper than the USA but still very expensive. About half that cost is the cost of administering it though.
You can also try a Google Site Search
Separate names with a comma.