thumbwitch can you dvise me

[alypaly]

i was confirmed with chronic parvo virus about 6 years ago and Gp was unable to find out what was wrong with me despite me being very poorly. After a lot of research and back tracking to when the problem started(DS2 getting slapped cheek at school)I asked a consultant to do a test for parvo B19. it came back positive and a clinician who was doing a clinical trial happened to spot my bllod test results. As a consequence i was asked to go an a clinical trial with 3 others on iv immunoglobulins. The bichemist told me that the parvo virus replicates in the bone marrow and it is likely that at some stage i will need future transfusions. They have never followed me up( in fact the iv info was never sent to my GP,post trial so i am not sure what to expect. And i have been feeling pretty grotty just recently with similar symptoms from the parvo

sorry 'advise me'..should check my spellings although im a bit tired now.
TIA

am sorry to hear of your illness there, alypaly - sounds awful! I'm assuming the IV Igs actually helped - do you know what class of Ig they were?

I am no expert in parvovirus but I can see what I can find out for you. Sounds like you have had pretty poor follow-up care though - I'd go back to the GP and insist on some proper follow-up checks.

i was treated with a 5-day
course of intravenous immunoglobulin (IVIG; 400 mg/kg perh . I felt 90 & back to normal after 14 days and have felt fine up until about 4 months ago and now all the symptoms are returning. The clinician has moved to St Barts in london and dont want to bother him as he has moved onto other research projects

OK, I've had a brief look - are you immunocompromised in any other way? have you any other underlying health conditions? I can see that sometimes people who are poor producers of IgM have been helped with IV IgM.

At the very least, go back to the GP and get your haemoglobin levels checked - just to be assured that you're not anaemic.

not much use, I'm afraid, you need the extra slinical info to work out what to do next.

that'd be clinical then...

it was Sandoglobulin; Novartis Pharmaceuticals)

think we both need some sleep ,i meant 90% not 90....freudian slip.

No not immunocompromised but have fluctuating increased RF and ESR with associated dry eyes. haem is 12.2

my Gp has had no info from the hospital and the biochemist actually came to my workplace to take a blood sample from me which i thought was a bit weird.

any help would be much appreciated as no one seems to know anything about the chronic parvo in adults. My GP had never come across it in 30 years of practice

found the published paper.this was the trial i was inwww.cfids-cab.org/cfs-inform/Virus/kerr.etal03.pdf if you have the time maybe you could make some sense of it for me. TIA

so is that as a result of the parvo then, seeing as how it is implicated in some arthropathies, or did you have it before?

just trying to see the bigger pic of why you possibly needed the IV Ig, that's all.

Well, I have found this report, which describes a secondary infection of PV in an immunonormal person - see if it rings any bells for you. One infection of PV has been thought to mean you are immune for life, but this report shows it isn't 100%.

HTH when you get to read it anyway.

dont know if i had them before the parvo as i wasnt tested. only had increased levels as far as i know from when a contracted parvo. Just looked at the trial dates ,its 10 years ago when i caught the bug.

i guess its a bit like chicken pox in that if you get it as an adult it is often worse than as a child.

BTW thankyou for taking the time to reply. i hope im not keeping you up.

no, it's the middle of the day here in australia so not an issue.

According to the report you linked to, there is an indication that some people have an antigen-specific defect in their antibody production system, hence they cannot clear PV from their own system. In the 3 cases reported, it appears that IV Ig cleared the infection completely; however, it would be interesting to see if they followed up their case studies to see whether or not re-infection/resurgence of the infection ever occurred.

I cannot tell you what your particular situation is but do you know whether or not you have had any recent (in the last 2-3 weeks) contact with any other case of PV? it is possible that you are one of these "special" cases with this specific immune-defect, in which case you aren't necessarily going to build up immunity against the PV, meaning that there is a possibility that re-exposure to the PV could re-infect you.

Now, I expect you do need to go to bed, especially if you're feeling a bit under the weather - but feel free to ask for any more help - I'll see what I can do.

thankyou so much for your help. Actually tbh i dont know how the trial details on me were ascertained as there was only one follow up blood test at six months.A little bit of data minipulation was raher apparent but as i felt alot better after the ig's i am not really bothered. But after reading info in ive infusion it seems beneficial in alot of viral /immune problems.I didnt understand some of it but have been in medicine as a medical rep and qualified dispenser for over 30 years and did understand the basics. I also read alot of clinical data as it is a genuine interest of mine.

Not sure if i have had any contact with PV again as DS2 is still at school and in contact with children from 4-18. So he may well have been.When i contrated it (at the time unbeknown to me as i only felt mildy unwell about 5-6 weeks after DS2) there were dozens of children at DS2's primary school with it and it was classified by our community health doctor as epidemic in our area.

We have a relatively new Gp at our surgery who is far more thorough than most ,so i think i will book an appt and have a chat to her.I am a very keen sports woman and play national badminton and all this has really taken its toll on me these last few weeks and my eyes(cornea ) feels so inflammed at the moment. Not good for seeing the shuttle. Also i am not one fro sitting down, so i am finding this all very draining.

Thanks again for your valuable help

On a lighter note,my son went to australia in july 2009.he absolutely loved it. He is in his last year in pharmacy at uni and was doing work experience in a pharmacy in Sydney. He then went north and travelled from Cairns all the way down the east coast. He loved it and found everyone really lovely that he met. He will definitely go back and it made me want to go even more.

Good luck with it - I hope your new GP does a good job for you and that you manage to get shot of it again. Might involve another round of IV Ig but hey, if it works, great!

It is a great place to visit, Australia - still haven't worked out if it's a great place to live but then we've only been here 6m so a bit too early to judge properly!