Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

[CAcfs]

Hi all, I am new to this forum.

I have had CFS for 9 years. It was sudden onset, in my late teens. It has changed my life for the worst ever since, of course (just being blunt here). So I literally went from healthy one day to sick as a dog the next, and never recovered. (just giving you an idea of my flavor of CFS, how it worked)

Though I had to drop out of high school, finish at nightschool, and only did "spotty" amounts of part-time college since........I have had spurts where I was at about 40% of my old self, which was enough to go out and meet my husband, and get married.

We actually have a great relationship and a great marriage, considering I am too sick to do much. We have been married long enough that we are "emotionally ready" for a baby and starting to have baby on the brain. We just have a lot of love to give. Money is a little bit of an issue, since I have never been able to work and treatment costs money, but we manage.

I have not yet been tested for XMRV. I would rather the technology for testing become a little better. I did exhaustive amounts of antibiotics for chronic Lyme since I tested positive for that, and bartonella, and babesia. However, my fatigue hasn't really gotten better at all, though all the other symptoms did, so I consider myself a CFS case at this point. I am assuming it's XMRV.

I will be starting Imunovir soon (isoprinosine) just to try "something."

Anyways, I am babbling, back to the point. We may try for a baby about a year from now. Simplly because I'd like to get my weak body a little stronger, by forcing some mild strength training, and more walking. My health seems to be on the up-swing at the moment, but I know intuitively that not much is gonna make this CFS go away, short of a miracle. I've tried a lot of things, because my parents have been desperate to see me get better (so they will pay for this or that treatment).

I know the XMRV research will probably be better in a year, but I also want to be prepared for unplanned pregnancies, because I have already had one (I ended up miscarrying).

Here is the link on what they recommend, to prevent a mother from transmitting HIV to her baby:

http://www.avert.org/motherchild.htm

From what I gather, an HIV positive mother can lower the risk of the child getting it to almost 1%, with the antiretrovirals.

I guess it's too soon to know if a mother with pretty bad, active CFS should be trying these drugs? Should I put off having children like 3-5 years, until "we know more" about XMRV?

Keep in mind that the transmission rate from mother-to-child of HIV is only 25% without drugs and without other preventive measures. And considering some healthy people in the population do have XMRV, maybe the side effects of these drugs is not worth trying to prevent giving XMRV to a fetus?

I would be fascinated to hear you all's thoughts on this. I would love to hear what Dr. Deckoff-Jones would say about this. If her daughter was older and married, and wanted a baby, what would she recommend? Anyone know of a way I could ask her?

Thank you.

 

[CAcfs]

This is a double post. How do I delete it?

 

[Esther12]

Us ill ones shouldn't have kids! Only the strong should breed, to bring forth the super-humans of the future.

It sounds like you're already aware of the potential dangers of transmitting a retrovirus. The science still seems rather up in the air, and I'm not sure when we'll know much more about these things. I have seen it speculated that parent-child is more of a significant mode of transmission for XMRV than HIV, but I don't know if there's any reason for thinking that other than the fact that CFS does not seem to spread in the way HIV does. Sorry not to be more use (other than my promotion of eugenics).

 

[aquariusgirl]

You could post your questions to her blog. XRx.. just google it.

You mentioned you misscarried. Have you been tested for hypercoagulation thur Esoterix?
It's common with this condition. It's hard to diagnose. Lots of false negatives and it's also a factor in miscarriages.
Google Hemex, hypercoagulation. The guy who ran it wrote some good stuff.
Labcorp bought Hemex and now it's called Esoterix.

It's pretty clear to me that methylation problems are the crux of this illness. Maybe not the trigger.. but what makes it chronic.
Professor Richard Deth has said (and I'm speaking from memory so double check this) that there's a link between mothers who have methylation defects and Down syndrome babies.
Rich Van Konynenburg who posts on this forum might be able to elucidate a bit better.
Obviously if you have methylation problems, you have folate deficiencies & folate is very important to avoid neural tube defects in babies.

I don't know much more than that & I don't want to be alarmist.
There are tests you can run to evaluate your methylation cycle and folate status.
Many of us can and are supplementing to address b12 and folate deficiencies.

If you look at the infertility forums, there are women on there running similar genetic tests and supplmenting similar types of supplements as those of us working to fix methylation problemes triggered by CFS.

I don't have the answers, but I think it's best to know about some of the issues I raised BEFORE you even think about getting pregnant so if there are work-arounds you can use them!

Good Luck

 

[mojoey]

I have always been puzzled by mothers with ME/CFS that decide to have children. There are so many risks involved it seems almost impossible to outweight them with benefits. Obviously I'm a guy so I can't possibly understand to the fullest extent a woman's decision in this regard, but here are the potential risks: vertical transmission of not only XMRV but other pathogens that are active in our bodies due to immune dysfunction, genetic predisposition to ME/CFS and disrupted genotypes DUE to ME/CFS, oxidative stress to both the mother and baby (feedback loop), transmission of toxins and contaminants like heavy metals which are potentially much higher in our bodies than in the normal population due to methylation blocks and cytochrome P450 disruption.

If you did decide to have a child with or without this condition, I would assume that you intend to be the best mother you can possibly be. You are still sick (and possibly disabled) and even if you got better, the track record suggests likely relapse. I can't imagine being equipped with this condition to be responsible for another human being, as I can barely take care of myself. Specific symptoms aside, the variability of the symptoms just adds an ever-present layer of environmental uncertainty that is so far from optimal for a developing child.

Maybe you think the emotional, spiritual, or existential benefits of having a child don't operate on the same scale as all these cons. Then go ahead and take ARVs during pregnancy which not only inhibit replication of a retrovirus but cause own harm to your body during the time when your baby is depending heavily on your body's resources. Sorry to be harsh. It's just that even if the cost-benefit ratio is 50/50, if the other 50 ever happened (my child came down with ME/CFS or some other severe illness because of my known issues with my body) I would never be able to forgive myself.

 

[kurt]

Each individual CFS case is so unique that I don't think there is a standard answer for your question. A couple adding children where one person has medium to high-functioning CFS works like a family with 1.5 parents. But that is better than being a single parent. It can work.

As for XMRV, if it were proven to cause disease, and you were proven to carry it, then I would consider treatment before pregnancy. However at this point XMRV remains a hypothetical problem for CFS and there is a LOT we still have to learn.

Many people with CFS have had and cared for children successfully. There might be increase risk of CFS in families, I have a daughter with CFS for example, but I also have other healthy children who have been partly raised by myself, a CFS father, and have not contracted CFS. Life is full of uncertainty, nobody can predict the future, you just have to decide if this is a risk you are willing to take.

 

[CAcfs]

Thank you for the replies.

I have looked into methylation issues, though I haven't done the crazy-expensive testing. I have done Rich V's 5 factors, and played around with some of the supplements for these issues. So far, methyl B12 helps moderately/kinda.

Anyways, when I was pregnant, I was on an anti-babesia drug that was inhibiting folate. The pregnancy was a surprise, and honestly, I still have no clue how sperm slipped through, because we were trying to NOT get pregnant. So I had no reason to be careful with what drugs I was on, unless you count having protected sex as a reason. The miscarriage happened so early, that I don't think it was from lack of bloodflow, because there was an "empty sac," meaning no baby was even visible. So the embryo/pre-embryo died before it was even visible on ultrasound, which points to either chromosomal issues (just a bad sperm, a bad egg, or things weren't dividing properly in the beginning) or issues from the drugs I was on.

In terms of "why would a woman with CFS have a baby....." I think the thing is, that I AM convinced there is a strong correlation with XMRV and CFS, but I'm NOT convinced of causation. There is a difference between CFS people testing positive for XMRV, and XMRV being the cause of the illness. From what I've seen, many sick women have healthy babies. By "sick" I mean CFS and/or Lyme. The women with Lyme being on antibiotics throughout the pregnancy.

Babies are born with their own immune systems, not their mothers' immune system. Even the mother has a different immune system during pregnancy than she had in her "real life." So if you consider that and the fact that I am not convinced XMRV is the CAUSE of CFS.....that is what gives me hope it is possible. However, I AM afraid of the retrovirus thing. Obviously I wouldn't be asking if I was sure it's nothing to worry about. I am on the fence.

 

[JAXintheCity]

Thank you for the replies.

I have looked into methylation issues, though I haven't done the crazy-expensive testing. I have done Rich V's 5 factors, and played around with some of the supplements for these issues. So far, methyl B12 helps moderately/kinda.

Anyways, when I was pregnant, I was on an anti-babesia drug that was inhibiting folate. The pregnancy was a surprise, and honestly, I still have no clue how sperm slipped through, because we were trying to NOT get pregnant. So I had no reason to be careful with what drugs I was on, unless you count having protected sex as a reason. The miscarriage happened so early, that I don't think it was from lack of bloodflow, because there was an "empty sac," meaning no baby was even visible. So the embryo/pre-embryo died before it was even visible on ultrasound, which points to either chromosomal issues (just a bad sperm, a bad egg, or things weren't dividing properly in the beginning) or issues from the drugs I was on.

In terms of "why would a woman with CFS have a baby....." I think the thing is, that I AM convinced there is a strong correlation with XMRV and CFS, but I'm NOT convinced of causation. There is a difference between CFS people testing positive for XMRV, and XMRV being the cause of the illness. From what I've seen, many sick women have healthy babies. By "sick" I mean CFS and/or Lyme. The women with Lyme being on antibiotics throughout the pregnancy.

Babies are born with their own immune systems, not their mothers' immune system. Even the mother has a different immune system during pregnancy than she had in her "real life." So if you consider that and the fact that I am not convinced XMRV is the CAUSE of CFS.....that is what gives me hope it is possible. However, I AM afraid of the retrovirus thing. Obviously I wouldn't be asking if I was sure it's nothing to worry about. I am on the fence.

I am a newly married woman and hope to have children one day. For many of us, having children is part of the dream of having a 'normal life.' I totally understand the impulse to have your own child, but even adopting doesn't necessarily guarantee your child will be XMRV (or any disease) free. Do what your heart says, but take the best precautions you can -- which would start with getting an XMRV test and, if necessary, a good infectious disease doctor -- and leave the rest to God. That's what we're doing.

 

[mojoey]

Whether XMRV is causative isn't the point. I think you're missing the bigger picture here. You seem to be basing this decision on only what we know for sure (XMRV exists and you want a child) and giving none to what we don't know for sure but is likely (the following list

1) XMRV may or may not be causative but it is a human gammaretrovirus and is likely to be pathogenic and transmitted

2) Taking ARVs causes certain mitochondrial and diastolic dysfunction, both of which may affect your well-being during pregnancy and possibly affect the baby's well-being directly

2) We likely have a genetic predisposition to this illness and if so it is likely transmitted to our children: the only question is the degree to which it is transmitted and expressed

3) ME/CFS patients likely all have a methylation block, increasing active viral load and disrupting proper detoxification of toxins and metals -- which is likely to be passed onto the child both while in the womb and via breastfeeding.

4) It is likely that all of the above could have shifted our genetic makeup which will also be vertically transmitted to some degree

5) On top of our immune dysfunction, our HPA axis is dysfunctional and this will likely affect the hormone systems involved in pregnancy, affecting both mother and baby.

You may choose not to assign a full value of 1 to each of these issues, but to assign a value of zero despite their high likelihood is a mistake.

 

[Navid]

baby

hi:

i'm going to write abt caring for a baby/toddler/child while being ill with severe cfids symptoms.

i'll start with my own personal belief that having a child (whichever way you happen to get it, naturally, ivf, egg donor, adoption, etc) is one of life's greatest joys. you really can't appreciate the love you feel or the joy you experience until you actually do it. writing down pros and cons on piece of paper does not give you the experiential high you get from being a mom....ok that's my personal opinion.

i became severely ill w/cfid's symptoms when my son was 2.5 yo. before that i was a very active, healthy person. i had sooooooooo many dreams of what i would do when i had my child. during the first 2.5 years reality exceeded my dreams. i had never been happier in my life....then boom the hammer came down.

i could not move at first, had to be in a dark room because of light sensitivity and headaches....i felt i was going to die physically....mentally and emotionally i was devastated that i could no longer care for my son.

my mother and mother in law came and lived with us for one year. we then hired a live in nanny. even today, where i am much better than i was at the start of the illness, and my son is almost 9, i am unable to do physical activities with him. i have never ridden a bike, skied, hiked, rock climbed, swam or run with him since he was 2.5. it is very sad but he is also the reason i am still alive. he is the joy of my world and brings me hope and happiness every day.

no one can give you an answer. you have to decide for yourself. you sound much more functional than i am : ) but infant time is exhausting!!!!!!!! hopefully you have family close by or can hire someone to help you when you are tired and/or sick.

good luck.


i hope your dreams come true and you are able to have the child you want.....don't forget adoption, easier on your body cfids-wise and you still get a child : )

hugs, shebacat

 

[mojoey]

Hey Shebecat,

Like I said earlier, I can't possibly vouch for the experiential benefits of having a child. However, regardless of the experiential high that you get from being a mom, I think those benefits do need to be weighed against the many responsibilities of being a mom. Ignoring the very likely risks of transmitting either a retrovirus or predisposition to ME/CFS might be part of rationalizing the pursuit of ethereal feeling(s), fulfillment of purpose, or whatever other intangibles that come with motherhood, but to do so is selfish in my opinion (and only mine).

Whatever a mother's opinions on the appropriateness of comparing the baby's physical risk factors with her own intangible highs, I would think it's far less debatable that she has a moral prerogative to protect the baby's well-being.

 

[paddygirl]

There is discussion on pregnancy and CFS/ME on Offerutah.org. It's not very old so might address the infection issue. You will find it on the educational meetings page. The very best to you whatever you decide. :Retro smile:

Paddy x

 

[Hope123]

Only you can decide what is right for yourself. It depends on what a child means for you and yours husband. I have non-CFS-affected friends who are older and have adopted domestically, internationally, have tried IVF successfully........none of these routes are cheap or easy. Another consideration would be that, although it is not the same, there are other ways to get involved with children through volunteering, mentoring, being a doting aunt, etc.

There is unfortunately not much good solid information out there about this and we don't know what will happen around the corner. I would be wary of getting on AZT without good proof that it works to prevent transmission since every medicine has side effects. In terms of "unplanned" pregnancies, "planned" might be better since it might help you prepare as much as possible -- are birth control methods a consideration here? {You don't have to answer this question} Also, talk to your docs about anything you take including supplements as they might need to stop/ lower dose/ change meds for a pregnant woman -- another reason to plan. Just generally, talk to your doc about preparing for a pregnancy in terms of pre-natal care -- eg. vitamins, limit exposure to potentially high mercury seafood, etc.

Concerning age: about age 35 for the mother is when the risk for Downs Syndrome goes up and there is some data that older fathers (50+) might have a higher risk of having autistic children. If you are younger than these ages, a consideration might be to wait a few years until there is better data.

This is the only good handout I've seen on pregnancy and CFS. Scroll down to the right link on the site.

http://njcfsa.org/

[someone should make a sticky of that handout; I've seen multiple posts over the years asking about this topic]

 

[acer2000]

Personally, I'd not even think about having kids unless I was in a life situation where I could provide fully for them. And being sick with CFS I know I'm in no position to do that. I can barely care for myself sometimes...

 

[Dainty]

First of all, CAcfs, welcome to PR. Glad you made it here.

There isn't going to be an easy answer to your question. Even when it comes to well-understood genetic illnesses, the question of whether or not it's ethical to have children with the risk of passing it on is answered by individualized genetic counseling from a professional highly trained in the area. Now throw in the little understood complexity of CFS and the XMRV breakthrough that's only in its very preliminary stages of being discovered and you've got a mind-boggling issue to contend with. Add to it the question of off-label use of ARVs and it's no wonder the responses are going to be all over the map. Don't be discouraged. Do try to be objective. And take what we say with a few tablets of salt.

A while back I researched CFS and pregnancy, and from what I recall it seemed that many women actually experience improvement during pregnancy, even complete remission, only to relapse back soon after the pregnancy. That isn't to say it'll happen with you, but it appears the odds may be in favor of it, and that fact is one I keep carefully stored away in my mind, as one who also yearns to have children.

I strongly vote to skip the ARVs, for many reasons. One, we don't know if they actually work. XMRV is not the same as HIV, in fact last I heard they were saying it's possible XMRV isn't treatable at all, because it does not replicate as quickly as HIV. The third known human retrovirus, HTLV, is not treatable, so just because it's a retrovirus doesn't mean HIV meds will have any effect on it.

Second, the drugs are toxic, with side effects. Now if you're absolutely sure they're necessary, then that downside is mitigated, but when we don't even know if those particular drugs are effective against XMRV, or that XMRV is treatable at all, or that XRMV causes CFS, then now you're risking yourself and your baby who may end up with CFS anyway. I understand those currently experimenting with ARVs as treatment, but realize that it's jsut that - experimenting. You don't want to experiment on your unborn child.

Another reason is that if these drugs are in fact effective against XMRV and XRMV causes CFS, a lesser dose or combination could make the XMRV resistant to the drug, makeing it at best harder to treat, and at worse untreatable. When HIV drugs were being figured out that happened to some people, and they died because of it. I'm not scientist or medical professional so I don't know how probable the risk of that is, but knowing hte risk is there should factor into your decision. My opinion is to strongly urge no ARVs for you during pregnancy.

Waiting a few years until we know more? You could, but I wouldn't. Two reasons: First, I figure best case scenario as far as figuring this whole thing out, 3 - 4 years from now XMRV will be well-known and lets say causation has been tenatively established. Realize that according to the two positive studies with their healthy controls, we can reasonably guess that the majority of people who are XMRV+ do not have CFS. So a few years from now if everything progresses the way we think it might then basically the best you can hope for is that a whole bunch of healthy people will be in the same boat as you regarding XMRV and having a baby and ARVs, the only difference is they won't have CFS, and there might be the option to participate in studies on it. But that's it. We might know a little more, the general public might be better informed and the scientists may be more accepting, but things won't be figured out by then.

My second reason is this: you don't know what the future holds. Don't put off the most important things in life hoping there'll be a better time for it. Don't allow the perfect to be the enemy of the good. For all you know, a year or two from now you could be injured in a car accident in such a way that you are unable to have children, wouldn't you wish that you had become pregnant while you could? For all you know your health may decline from here on out, wouldn't you wish you had become pregnant while you were at a good spot? If you and your husband are together on this, you both desire a baby, you would both love him/her very much and are collectively capable of taking care of him/her, and after reading these replies you are not dissuaded, then don't wait! Life is short, and tomorrows aren't guaranteed.

Now yes, it is not an easy issue. If worst case scenario happens, that XMRV does cause CFS, that your child is born with XMRV and develops CFS, then you will wrestle with your decision and your child will wrestle with your decision as well. In the darkest moments your child might ask you why you brought him/her into the world knowing s/he might suffer like this, and you might find the agony of watching him/her suffer nearly eats you up with guilt. That stuff would be terribly hard to deal with, and if you go through with this, that would be absoute worst case scenario.

But here's the way I see it: worst case scenario there's still a new person in this world who would know they're loved and cared for and cherished. And though times could get really rough, a loving family will grow together and heal together and share each other's burdens to make the load collectively a little lighter. Would it be easy? No. But since when is family dynamics easy? Yes, we have a different dimmension added that healthy people generally don't have to deal with. But you could say the same for those living in poverty, or those who are famous, or those who are carriers of genetic diseases, or military families, or a host of other unique situations. The point is, while each individual situation is unique, the dilemma of bringing a person into a world that may not be postage stamp perfect is par for the course. Difficulty is hard on kids, but at the risk of sounding callused, that's life. Welcome to planet Earth.

Let me give an example. My little sister, whom I love dearly, has been growing up with an absentee big sister, and because of my condition she's had to grow up fast. Too fast. It both breaks my heart and fills me with pride to see her respond to situations with a maturity beyond her years. We're close, even though we aren't able to connect very often. She understands how much I love her and that I would do more with her if I could. It hurts her to see me in pain and to hear that I'm having a rough time of something. I dearly wish that I could throw off this disease if only for her own sake, so that I could be more like the kind of big sister I want to be and make life less painful for her. But you know what? As a family, we're okay, and as a person, my little sister is okay. She is growing up marked with a unique perspective on suffering, but she's active and enjoying life and blossoming into a beautiful young woman inside and out. My inadequacy has thankfully not held her back as I feared it would, and it's such a lovely thing to witness her life unfolding. Despite hardship that I wish I could have protected her from, she's alright, and I'm alright, and our parents are alright. As a family, we're making it. Life is rough, but you stick together, love each other, get the support that you need, and despite the hardship there will be a precious aspect of it that cannot be obtained otherwise, and that will be a blessing.

If you decide to have a baby, know that your CFS does not in any way make you inadequate as a parent. No matter how ill you become, if you are capable of loving your child, showing them that and your child is physically provided for, then that's enough. You might not be able to go to every game of theirs, but you will be able to ask them how it went when they get home and encourage them to telll you all aobut it. You may not be able to make them cookies, but you might be able to direct them from the couch on how to do it while you all laugh together at their errors. You might not be able to clean up after them...that just means at a young age there'll be no option but to learn that the must clean up after themselves. Do you see what I'm saying? Every parent worries about whether or not they're capable of raising a child right, and those with a disability have an added dimension to it. I'm telling you, your kid(s) will be okay.

Your child may develop CFS, and if so you'll be there to support him/her, to validate their symptoms, to be their staunch advocate and guide him/her though the painful ins an douts of this illness. Who better equipped than yourself? Your child may be perfectly healthy, and if so you'll be his/her greatest cheerleader, urging him/her to grasp life to the fullest, because you never know hwen it might be snatched away. Your child might be born with a completely unexpected rare genetic disease that no one could have seen coming, and you'd have a bunch of unexpected hurdles to cross. Well by now you're probably pretty good at handling doctors and doing medical research, you'd put that to good use right quick to make sure s/he gets the best medical treatment possible.

Again, my point is, no matter the outcome, it'll be okay. At least, that's my personal perspective on things.

 

[Mark]

I'm single 15 years now because I'm not much of a catch as it stands and because I can't imagine visiting this hell on anyone: even if I didn't transmit it to them (which would seem likely one way or another), it never seemed very loving to go out and find someone and then expect them to care for me when I can barely keep myself going as it is. So: the question never arises for me and probably never will, now. I'm so far past dealing with that, that I don't even feel sad as I write that, even though I've always wanted a family.

And on the other hand. My sister has it (or something very similar, whatever...), and she had a hellish time during and after pregnancy and never really recovered from that (although she's had good and bad spells over the years), and her daughter has various issues that are (to me) clearly related - and yet, somehow, despite my sister being terribly ill, and her daughter having all kinds of issues, the kid is also as strong as an ox and a happy, outgoing, delightful child. You couldn't spend time with her and think she should never have come into the world.

So: no right and wrong answers. An enormous challenge to take on for the ME/CFS patient, and something to think long and hard about for sure, but I guess if you think life is still worth living no matter what suffering it entails (and I'm really not certain it is, personally), then you would go for it. I guess I might well feel the same way about the whole thing even if I wasn't sick - it's a cruel world, and doesn't seem to be getting any kinder right now...

Cheerful stuff, huh?

 

[Navid]

mojoey:

adoption is a possibility and if the original poster's cfids is manageable enough that she can even consider having a baby then that is a choice for her to make.

if she decides to get pregnant and give birth herself then the risk to her own health and her babies rises. altho cheney says many women in his practice go into remission during pregnancy.

i personally think the sleep deprivation i experienced during my son's 1st year was another straw on my camels back.

if i was as sick as i am now, i would never even think of having a child....they are extremely energy consuming.....but despite all your wise and very helpful scientific and medical insight...there is a great joy to being a parent and giving that up is a very difficult decision.

i don't know but it may be different for men rather than women, really don't want to open that can of worms here. there is also an age factor, when i was in my mid 20's the thought of having a child, even though i was at peak health, was horrifying...give up travel, parties, dinners out for a kid ....no way, but when i entered my 30's my view changed. i had experienced all those other things and wanted to experience yet another phase of life...being a mom.

like all the posts have said no easy answers.

i thank you for pointing out all the medical challenges the mom and child will face....just wanted to share the joy of being someone's mom.


believe you me, i would much rather be a healthy mom. despite the fact my child and i cannot do physical things together we share many other deeply important meaningful experiences.

take care

 

[Daffodil]

i would not have a baby without taking the same ARV's that HIV+ pregnant women take. i am not sure what the risks to the baby are, but if the drugs do not seem to harm the baby, then perhaps it might be Ok.

my personal decision is to not have kids. there are millions already here with no homes...

 

[illsince1977]

OK, I have a rather unique perspective to add to this discussion.

I got sick, suddenly (no flu-like associated onset), the same as you did, only it was while I was pregnant with my first child. Onset was dramatic. I'd feel fine, do my regular workout swimming half a mile (that's 1600 meters for those of you on the metric system) and blam! I was out flat in bed. It just kept getting more and more frequent that I was out flat whether due to PEM or not until in 1985 I could barely get up to go to the bathroom and could not even sit up in bed. My daughter is now 32 (33 in 2 weeks) and perfectly healthy. So is her little brother, who is now 29 (30 next month!)

Pregnancy was hell for me (both of them), but I'm convinced it was because of whatever pathogen has caused this illness, and yes I am convinced it is a pathogen in my case, not the pregnancy. Could I have done it with my ex-husband alone? No not in a million years! My ex-husband's parents help made it possible to raise my children. Would I do it again if given a choice? I torture myself with that question almost every day! The answer is invariably yes, even though it probably was not a good choice on my part to have children with someone who it turns out couldn't go the distance with me when I became sick.

Never underestimate the power of and the drive behind the desire to be a parent. It has taken 2 mothers (no offense to you men out there, you can be fierce, too) to spearhead the search for (Annette Whittemore) and pioneer in the treatment of (Jamie Deckoff-Jones) to bravely step out in front of the moving truck (and it's a semi, not just a pickup) that is this illness. Regardless of whether XMRV holds the key or not, you've got to hand it to the mothers!

I am now with a man who always wanted to have his own children. His ex-wife lost their only child when she was 5 months pregnant. This lack of children actually was a constant hole in his life. He only wishes he could have had children with me or someone. He claims he never would have deserted the sick mother of his children, but even he cannot truly judge what another man had to go through raising children with a sick wife. It is not a decision any one can make for you. If your husband and anyone else in your support system is willing to help with the children, then more power to you! At least you will be going into it with your eyes open.

Will it make you sicker? I have read another woman write here on PR that she felt fantastic during her pregnancy, so I doubt a case can be made against pregnancy for that reason. That must be variable with the woman, since she felt better and I felt worse.

Is vertical transmission a possibility? Again, I'm sure some children may get it that way and others wind up healthy like mine. My best friend's stepdaughter got sick with CFS in college, and she had a baby a year ago. Her daughter, I'm thrilled to report, so far seems perfectly healthy. The parents need all the help they can get from the grandparents, but I can't imagine from what I've heard that she would not have had her baby.

I'm sure that, because it is obvious that you are a responsible thoughtful person, you are already aware that if it turns out you have XMRV, and if you decide to take antiretrovirals, that like many other drugs, some cannot be taken while pregnant. Other drugs may turn out to be recommended during pregnancy, of course, the way AZT now is with HIV. Who knows? No one does, yet.

Too many ifs! I do not envy any young person's choices in this matter.

Sorry if anyone feels I have come off too strong here. I just felt compelled to get my two cents worth in here.

I am very sorry for your loss regarding your miscarriage.

 

[Daffodil]

i met a woman who's daughter got spina bifida (if i recall correctly)... and they think it was due to this virus preventing the fetus from absorbing some nutrient. the daughter is now grown and does not speak to the mother. she is angry that the mother had a child while being ill, even though, at the time, the mother had no idea it was a contagious virus.