HELP needed re pregnancy and XMRV testing in the UK

[wenipeni]

Hi there

I've been looking through the forums trying to find answers to my questions, but am now hoping someone will take pity on me and help me out.

I see that some people have managed to get reliable tests done from the UK but I'm not sure how that was organised(and that there is some speculations that sending the test overseas can affect the result- is that right?)

Anyway, I've got to be honest I am freaking out a bit as I fell pregnant around the time all of this XMRV stuff came to the fore, and I am obviously very worried about transmission. I have been looking into how HIV is transmitted to babies as it seems to be the only site of comparison and it seems that avoiding a vaginal birth and choosing not to breastfeed at all can have a big impact on reducing the chances of transmission. At the moment, I am hoping to persuade my consultant to let me have a c-section so that I can take these measures but don't know how helpful they will be. I'm not sure if I can arrange reliable testing for myself from the UK at present?

I have severe ME and Fibromyalgia for over 10 years, and getting pregnant was not a decision we came to lightly. However the added worry over the XMRV and how to deal with it is not helping. Any advice or help greatly appreciated.

Thanks you
Gwenan (Wales, UK, age 35)

 

[ukxmrv]

Hi Gwenan,

Send an email to this address in the UK and the organiser can tell you about the process.

contact@xmrvtesting.co.uk

Wishing you all the very best for a successful XMRV- birth!

 

[Abraxas]

Welcome Gwenan, there's a thread here on UK testing - post #9 is particularly useful if you are too ill to get to London : http://forums.aboutmecfs.org/showthread.php?2449-UK-testing

As far as I know the testing dates are every Monday at Biolabs, and will continue to run throughout March, possibly longer. The WPI are supposed to be releasing their serology test sometime soon which should be more reliable if you were able to hang on for a while. Best of luck.

 

[Mithriel]

I can't comment on XMRV, but I have had 3 children while I have been ill with ME and they are now happy, healthy adults.

I know of many people who have had children while ill. There are families where mother and children have all got ME/CFS but not all by any means.

It may be best to avoid breast feeding. It also means that other people can feed the baby if you are too tired.

If your doctor won't OK a C section, don't worry too much as the risk of infection must be small or all our kids would be ill.

Enjoy your pregnancy, hugs

Mithriel

 

[wenipeni]

Thanks

Thanks to everyone who has responded - its a big help, and I see it is still possible to get tested in the UK which is excellent. It was also nice to hear that it's possible to have healthy children when you are ill yourself (this seemed obvious to me before I got pregnant although we realised there is always a chance things don't work out, but now i'm a pregnant, exhausted, homonal wreck missing all my usual pain and sleep meds everything seems a massive problem and I'm convincing myself of all kinds of horrors for the poor child!!!)

Thanks again. I'm sure I'm not the only pregnant person with ME worried about this XMRV situation but its not something that crops up on the normal pregnancy forums - surprise surprise! (And I still can't decide if I would want a positive or negative result anyway - obviously negative would be better for the baby and that is certainly my main concern at present, but what if it turns out that XMRV is the key to a cure and I don't have it?Like I said a hormonal fruitcake in need of a good 20 hours sleep at least!!)

Thanks
Gwenan

 

[leaves]

Congrats with your pregancy, that is great! Dr Klimas recommended no breast feeding. There are additional things you can do to help protect your newborn by giving it antivirals (is done for babys with hiv+ mums) obviiously under dr supervision, good quality probiotics to support immune system (e.g. look up progurt which is human strain, and would give your baby a real good start). Probiotics are important especially if you dont breast feed and give vaginal birth, as this is the way in which kids get their good bacteria (although nowadays with all these antibiotics it is questionable how "good" these bacteria are). Best to get advise from a good cfs doctor/ immune specialist. I recommend Klimas, but sure there are more people around.

 

[ukxmrv]

There is a doctor at the Chelsea & Westminster hospital in London (she also works as a private doctor at a clinic in Brighton) who treats HIV+ people who want to have their own families. This includes HIV+ women who are pregnant.

She may know of someone closer to you who can help if needed

Dr Carole Gilling-Smith is Vice-President of CREAThE, Medical Director of the Agora Gynaecology and Fertility Centre in Brighton and Director of Fertility Services for patients with Viral Illness at the Chelsea and Westminster Hospital, London. She graduated in Medicine from Trinity College, Cambridge and Addenbrookes Hospital and completed her specialist training (CCST) in Obstetrics and Gynaecology. She is a Fellow of the Royal College of Obstetricians and Gynaecologists. She earned a PhD in the genetics of Polycystic Ovary Syndrome and is Honorary Senior Lecturer at Imperial College School of Medicine, London.

Carole developed the UKs first comprehensive fertility programme for HIV discordant couples using sperm washing at the Chelsea & Westminster in 1999. In 2002 she extended the programme to include infected women and the Chelsea & Westminster is now the main UK centre for patients requiring assisted conception with blood borne viral infections and receives referrals from all over the country abroad.

http://www.creathe.org/index.php?id=27&language=english&menu=3and

 

[JAS]

Haven't really anything else to add to the above but just wanted to wish you and your little one well Wenipeni...! x

 

[Athene]

Yes, ladybug mandy is right, get a C section and DO NOT BREASTFEED. Many viruses are in breast milk including HHV and Epstein Barr and XMRV probably is too according to WPI. The C section will reduce/eliminate risk of blood contamination.

I gave this illnes to my son, he was born by C section but I breast fed and I could tell my milk was diseased (it was yellow and bitter tasting.) When you have a baby you are put under extraordinary pressure to breastfeed by all medical professionals so you have to be very strong to refuse. You will need to stick to your guns.

Lyme disease crosses the placenta so there is nothing you could do about that. A number of PWCs have this, you could try to get tested for it so at least you will be prepared if the baby is infected. If so he will need early therapy as congenital Lyme causes autism.

 

[alphahusky]

pregnant also

But I also have a 17 month-old. I chose to breastfeed before all this XMRV stuff came out, though I suspected there was a viral cause to my disease. I actually had to fight to breastfeed, because I was on a beta blocker during the pregnancy (though my OB still doesn't understand why) and my daughter stopped growing in utero, etc., and my doc was sure she had some genetic sensitivity to beta blockers. Nope. She has Down syndrome, and it caused all her issues. But to be allowed to breastfeed, I went off my beta blocker for severe OI symptoms cold turkey, no medical help, nothing, but they thought I had no reason to take it anyway. I can't even imagine them allowing me to take AZT or any other precautions now that XMRV is possibly in the picture.

I stopped breastfeeding my daughter after my PCP, who is a specialist in ME/CFS and Fibro said no one knows if it can be transmitted by breastmilk. I'm still ticked off that I'm 42, I waited this long to have kids, and still no one can tell me one d#%* thing for sure. 25 1/2 years down the road with these diseases, and it's still conjecture.

I decided personally to breastfeed because my mother did not, and I had ear infections and lung infections till I was 6 and continuously. I felt I was giving my daughter antibodies to my confirmed high titers of EBV, Parvovirus 19, and HHV6-A. Who knows, is what the answer is. The doctors all brushed off my concerns, but I've been anxious since this new pregnancy started and since my doc suggested I might have given my beloved little girl, who already has Down syndrome, my d#%* disease(s).

I wish you luck in finding out anything for sure. I ended up with a C-section because my daughter stopped growing between two ultrasounds two weeks apart, and she was having bad Non-Stress Tests. I have to have another as it will be just under 2 years since I had her when I have the next. I doubt I'd have the energy for vaginal birth anyway, my daughter of course takes all my energy. I still want to breastfeed baby #2, I fought so hard to breastfeed my daughter, but it sure would be nice if I knew for sure anything. If XMRV isn't a cause or I don't have it or whatever, then I'm letting baby #2 go without the antibodies for nothing, and there won't be a way for me to be confirmed tested by Oct.

What makes me the angriest is what I said just above. 25 plus years with this disease, and no one can say, "Yes!" or "No!" to me. In fact, I was told definitely breastfeed, just get off the beta blocker (my OB was stunned when the Karyotype test came back positive for Down syndrome). But 25 years, I waited through all this hell, just to find out right after my daughter's first birthday that I "may or may not have made her sick." Thanks, governments, for not bothering to take us seriously for all these years.

 

[alphahusky]

I'm having the kind of day where I don't know if you're serious or just joking. I assume joking.

 

[ukxmrv]

I'm not surprised that you feel like you do, Alphahusky.

Feel free to joke or be serious. I think anyone would be angry

I'm angry at what has been done to me and I have no children

 

[alphahusky]

nope. not joking here

Wow. Well, can't say I blame anyone with this disease for reaching their breaking point.