# Anyone with M.E. / CFS having IVF?



## Cheri75 (Feb 15, 2014)

Hello,
Just wondered if here are any fellow M.E. / CFS ladies having IVF treatment. I've read many times that these conditions don't affect your fertility. But I'm wondering if I should be looking to tailor my clinic to someone who checks and works with immunes. 

xx


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## artist_mum (Jun 19, 2012)

hi cheri75

sorry only just seen this&#8230; answer from me is ABSOLUTELY!!

I had M.E. for 15 years. Never conceived during that time. At age 43 after finally getting well from M.E. (used www.thelightningprocess.com amongst other things) I fell pregnant for the first time in my life. Miscarried but it made us want to try IVF. Had one try with Eugin in Spain, and it was negative. Went back for the frozen embryos but this time with help from ARGC for immunes. Got a positive result but sadly lost it again.

When i had my consultation with Mr Taranissi at ARGC he said that without a doubt failing to conceive during my 20s and 30s whilst ill with CFS was definitely connected. I did the testing for immunes (expensive £800 ish, chicago test) and it showed some issues with immunes. I would not pursue IVF without immune treatment myself, and I consider myself to be post M.E. as I have no problems or symptoms anymore. But I think it has left me with an overactive immune system and they can give you meds to sort that out.

Best of luck. I know a friend with M.E. who conceived naturally twice so it can be done! If you're doing IVF though, i would see consultant who treats for immunes.

xx

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## CrazyHorse (May 8, 2014)

I had ME/CFS from aged about 15 until my early 20s, triggered by a serious kidney infection closely followed by a bad case of mononucleosis. It was very bad the first 4-5 years, and then gradually improved. I'm still a bit more susceptible to infections than average, and still need more sleep than most people to function. I also think the illness permanently impaired my memory (fortunately, it started off very good, so I still function OK). Otherwise, I consider myself "well" now.

I've not had any immune testing or treatment, as I have other known issues and the research on those areas isn't too strong at this point. But I'm extremely interested to hear other ladies' experiences. I've never had so much as a faint chemical pregnancy in years of TTC -- no idea if that's related to my history of ME/CFS or not.


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## Annie81 (Nov 15, 2014)

Hi all

I am SO glad I found this thread. Cheri75 I am very much the same thing as you. 

I too have ME and am struggling to conceive. I first got sick about 5 years ago and had a very difficult first few years and while I have improved significantly I am by no means 'well'.  I am increasingly wondering if the ME is playing a part in our fertility issues. I know our immune systems can by dysfunctional but had always heard that the illness didn't effect fertility so was trying to ignore those lingering doubts...! 

I'd be interested to hear what CrazyHorse and Cheri75 decide to do. Although we have are just starting out with IVF and don't have any failed cycles yet, I too was wondering whether we should go straight to a clinic that does immunes (I would prefer Zita West I think but am also considering ARGC). 

artist_mum - really interesting to hear ARGC's comments about your ME. Coincidentally I too am considering lightening process. I'd love to hear more how you found it?!

xx


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## artist_mum (Jun 19, 2012)

hi

Annie - regarding the ME, i had tried so many different things over the 15 years I was ill.  I was seriously affected for 2 years (could not go out, viral every day like a major flu) and then intermittently for the other years.  The lightning process completely cured my sleep issues.  And i mean completely.  Which meant everything was easier.  And I no longer think of M.E. in my life and I do what I want to do.  I know the lightning process is considered controversial because apparently 80% get well and 20% do not.  And the 20% are not happy! So you have to go in to it absolutely believing you can be in the 80%.  I thought to myself 'if so many can get well from this, then shouldn't I be one of those!'.  You have to work at it too, it's not a magic cure, it takes persistence and willingness to change your thinking.  I know some people say it is harsh as a treatment - but for me, no harsher than being ill all your life.  My advice… if you decide to do it, shop around for the practitioner that you most want to do it with, someone you click with (or 'feels' right for you).  On the ivf front, I too would prefer zita west, she has a great approach it seems.  For me, age and donor egg requirement took us abroad but as they didn't consider immunes treatment scientifically proven, we used ARGC just for the immunes part.  The immunes testing is expensive & ARGC I found quite stressful (loads of tests, checking things, in every day etc) but the actual immunes treatment itself is just steroids (if you can bear that - i didn't like the idea but actually it's not for a long period of time and if it works...) and intralipid so it's not much to add to a cycle and just might make all the difference.  Best of luck with everything x

Crazyhorse - I totally relate with the sleep thing - I also need more sleep than most people, and although I can manage on less, a good 10 hours is my preference!

Cheri - hope you're finding out what you need to go forward.. good luck!

xx


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## Cheri75 (Feb 15, 2014)

Hello everyone, thank-you so much for your responses, I'm sorry that I have not seen them until now.

I have been away from the site for some time after my 2nd failed IVF cycle. I have since had another cycle in Feb, but that also resulted in BFN  

We were so hopeful, (possibly thanks to a change to a short/flare protocol) we managed to get 5 eggs, a great result for us. All 5 fertilised and we even made it to a 5d transfer. Egg collection was on our wedding anniversary. And our testing date was mum husbands birthday. We thought luck would finally smile on us.

I've had CFS since my mid 20's, it's never left me completely but I control it through lifestyle. I did have a relapse a couple of years back when we lost dad to advanced prostate cancer. I've never heard of the lightening process, to be honest I have received little support since my diagnosis so I'll have a read up on that, thank you artist mum.

We tried an endo scratch this time, 1 round of Intralipids 12 days prior to transfer. Clexane 20mg and Gestone 50mg which stopped the pre-test bleeding. But I experience cramps again after transfer and some very sharp strong ones in the following days. D3 after my D5 transfer I felt very ill and weak, VERY cold, lots of clothing layers and 2 duvets on me. (This is the 2nd time I've felt like this during the 2WW).

I feel in my gut that something may be going wrong, although I do also worry it’s a quality issue. Each cycle I feel like I am experiencing stronger reactions – but maybe it’s the drugs. We’ve only ever had one time when I felt I might have been pregnant, it was when I taking clomid. AF was 1 days late, but it arrived with pain like I have never experienced before, I was pouring with sweat and felt like I would pass out with the pain – seriously considered called an ambulance. Doctor said it could have been a very early miscarriage but I did not test so we will never know.

I’m wondering what we should do next and where would be best to go? We don’t have a huge amount of funds and I know immune testing and treatment will be expensive. Looking at ARCG although not sure if my AMH/FSH would be an issue, Dr Gordy, Serum, Zita West, it's all so confusing. I really don't know which way to turn. All my family think we should give up and think about adoption, and my husband just goes with the flow and never questions anything. 

I feel really alone and have no one to talk things through with - I'm a pretty indecisive person, it's so hard not having anyone to help you think through options.


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## Annie81 (Nov 15, 2014)

Hi Cheri75

Apologies I've just seen this and your response on the other thread! So sorry again to hear about your 3rd attempt.  

In terms of clinics, I originally tried to go to ARGC as it has the highest success rate but made the mistake of mentioning my chemical sensitivities on the form and they wouldn't see me as they were worried I would react to the anaesthetic. 

So we then decided to go to  ZW (who we found excellent in terms of patient care and have a high success rate).  As I mentioned in my other post with me they found quite a bit of immune stuff (high TH1, over active NK cells) and some thrombophilias and under active thyroid. They put me on thyroxine, intrallipids (I was supposed to have 3 prior but ended up having 4 due to delayed treatment), steroids, clexane and low dose aspirin. Anyway they must have done something right as I finally implanted and got a BFP. I also gave up Gluten. 

From what I've heard, stabbing pains can sometimes be an immune response to the pregnancy. I had very similar thing and the would bleed early.

Its really hard choosing a clinic, but perhaps meet with a couple of the Drs and compare what they have to say. I personally really liked ZW to ARGC are excellent as are most of the ones you've mentioned. 

xx


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