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The steroid junkies' perfectly unscientific medical trial

fili - maybe he means this, about DQ alpha testing? see below - this is a post i wrote in another forum:

have you read "is my body baby friendly?" it's Dr Beer's book (he's died of a heart attack a few years ago - maybe he had clotting issues?) but he seemed to be an awesome man dedicated to RPL. his clinic is still going strong in CA. google it. the book is a good read and covers a ton of rpl issueshere is the website to the clinic

https://www.repro-med.net/repro-med-site2/


a good site (forum) that discusses all of the tests dr beer's clinic does). I printed this list out and had my RE go through each one and she checked off the tests I had done, and she listed other tests I did that weren't on the list. There were a few tests my RE didn't do as they either "just don't do" tests like that (like the genetic similarity test) or I didn't need the test as my other related test was negative.

https://www.fertilethoughts.com/for...ers-testing-ivig-explained-fish-oil-info.html

here is a link to one of the treatments they do if your genes are too similar called LIT - see below - what diagnoses it is DQ alpha testing (my RE office doesn't do this treatment).

https://www.repro-med.net/repro-med...unization-therapy&catid=2:pages-ett&Itemid=25


Immune Testing A. DQ Alpha This test measures whether the DNA of the couple is too closely matched. These tests give you back two numbers for both members of the couple. In a normal pregnancy the father's DNA in the baby tells the mother's body to set up a protective reaction around the developing embryo. If the father's DNA is too closely matched to the mother's, there is a good chance that the embryo created by them is unable to differentiate itself from the mother's body. The mother's body then rejects the embryo because it cannot identify the embryo as a baby. Each person gets two DQ numbers from their respective parents. Similarly, when couples try to have a baby, they also give DQ numbers to their fetus. These numbers are, for example, 1.1, 1.2, 1.3, 1.4, 2, 3 or 4. Although there are breakdowns of the 2's, 3's and 4's, many scientists find that only the 1's are significant, so they break those down to one more decimal. Presently DQ Alpha testing is identifying more and more numbers, for example, DQ 4.0, 4.1, 4.2 and 4.3.
 
Thanks Hopeful, it's kind of similar to that - I just emailed the doctor in question and got an answer :shock: He actually said HLA Markers. In a very simplified way: If I have this certain immune system genotype and my husband has a certain other one (both of which do not mix) - it's not a question they're too similar it's more like when together they form a gun, then my body fires NK cell bullets and attacks the pregnancy causing defective implantation!! This rings so true for me as my mild period type implantation cramps always stop so soon into the pregnancy. Sounds like 'natural selection' to me and makes 'biological' sense but thankfully the wonderful prednisolone suppresses these NK cells. :happydance: I know about Beer (thankyou) but it's actually another professor called Lesley Regan who has pioneered this study. Here's a link. https://humrep.oxfordjournals.org/content/23/4/972.full.pdf+html

I think Beer was a very good launching pad for all this new info though!
 
Hopeful - from your links I got this which is VERY interesting and explains why early progesterone therapy might work for unexplained like us. Here's my theory. Good levels of progesterone are produced in a normal pregnancy right? So bad levels mean the pregnancy is not doing well or hasn't implanted well. I believe that progesterone can't therefore 'rescue' a failing pregnancy but if it's given early it's an extra defence against those NK cells attacking the implanting pregnancy as the body is being kind of tricked into accepting this pregnancy! What do you think?
H. TJ6 Protein
There is another cell in the lining of the uterus that produces a protein called TJ6. This protein production is stimulated by Progesterone that helps in controlling NK cells by attaching to their DNA and breaking up the NK cell's development. This TJ6, which is a small protein, has the main task of controlling the NK cells.
 
I concur fili - lol ;)

I did alot of reading about the affect of progesterone on prostaglandins too but I can't find the studies I was reading. That Dr Beer article just mentions prog stopping prostaglandin production and uterine contractions but from what I read, high levels of prostaglandins aren't good in early pregnancy.

I have a degree in biology and love reading about this stuff. Wish I would have been interested in RPL research back then and studied it now for a job but I had no clue what rpl was back then.
 
Filipenko, I am really uninformed about the genotype discussion, but I'm not sure I agree with your implantation theory. Having cramps is not a reliable symptom at all (I didn't have any this time round for example) but your baby hung in there until it died at 9 weeks. Everything looked good until then? It was an mmc?
That doesn't sound like bad implantation to me :shrug:
 
Ha, hopeful! With that background you must become our new subject matter expert! I hereby promote you to Dr Hope :happydance:
 
Also I have 'discovered' why intralipid drips of fat protein and carbs might work to supress the immune system. Cortisol is produced by the body to supress the immune system so it doesn't attack the body unecessarily. Cortisol is also produced when fat, protein, salt, carbs and sugar need metabolising. So if you're on a drip of all these nutrients more cortisol will be produced thus helping to lower the immune sytem - a boost! I am proud of myself tonight! What are your thoughts fellow steroid junkies!?
 
Thanks pip - no that may not be true as actually lots of ladies don't get these cramps and I have just chatted to my sister and she didn't get them either, but all the rest of the stuff fits me at least. All my miscarriages have been behind dates (mmc if they weren't being monitored)
 
Wasn't there research showing that women with higher cortisol levels were more likely to miscarry? Hmmm this is getting complicated :rofl:
 
Yeah Dr Hope from now on and Dr Pip too methinks - good to have some doctors on call!!!
 
Wasn't there research showing that women with higher cortisol levels were more likely to miscarry? Hmmm this is getting complicated :rofl:

The only thing I can think of in answer to that is that they become more suseptible to colds / infections because their immune sytems were normal to begin with. Higher stress levels mean higher cortisol levels which supress the immune system. And I don't get that at all, as wouldn't high stress levels mean you'd want your immune system to be all geared up! Aggghh!

I get ill when i'm stressed though, makes sense that way...
 
I think that when you are stressed your body prioritises to help you deal with the situation first. Hell, we need a proper doctor in here to explain all this. Filipenko, you ask difficult questions!
Just take the damn pills and have your baba :haha:
 
Everything looked good until then? It was an mmc?
That doesn't sound like bad implantation to me :shrug:

This is where there is also a 'crossover' in symptoms between chromosomally abnormal fetuses and normal ones, eg heartbeat stopping, gradually getting behind dates, odd features like a large yolk sac etc can be for both normal and abnormal apparently. My pregnancies have been all these. The effects of bad implantation, as far as I can imagine this in my head is like it is hanging on by threads and not enough of them so it just runs out of nutrient fuel. My hormone levels doubled just about normally for my last pregnancy (one no. had to be 190 exactly and it was 191) then they spiralled downwards and followed odd non-doulbing patterns which fits exceptionally well with something continuously attacking the pregnancy after 'implantation'. Not at all sure if i'm right of course but i'll be bringing all this up with the prof next week. Good to discuss with like minded girls anyway! :friends:
 
I think that when you are stressed your body prioritises to help you deal with the situation first. Helm, we need a proper doctor in here to explain all this. Filipenko, you ask difficult questions!
Just take the damn pills and have your baba :haha:

:xmas13: ok! No more questions! Just trying to get to the bottom of WHY but yeah, the end result is take the damn pills so who cares why right?!!
 
Fili- with my last mc the embie looked like a scrambled yolk in it, not formed right in the sac. And I though maybe that's what it looks like when an immune system attacks it. So I googled u/s pics of immune system attacked embryos and came up with nothing . Did your u/s look like that?
 
Fili- with my last mc the embie looked like a scrambled yolk in it, not formed right in the sac. And I though maybe that's what it looks like when an immune system attacks it. So I googled u/s pics of immune system attacked embryos and came up with nothing . Did your u/s look like that?

Well the doctor doing the scan said the yolk sac didn't look normal at all and it was way too big for a yolk sac & 60% chance it would miscarry. In my mind this all fits with something in the immune system attacking it so really hopeful about the steroid treatment now, probably just need another chromo normal baby. I would think what you think too with regards to your 'scrambled yolk'.. I wish i had a biology degree now, trying to interpret all this stuff is a nightmare :dohh:
 
Hello ladies spoke to Prof Quenby last night she was really nice and gave me time to ask ?s unlike the doc i saw at the recurrent miscarriage clinic!

She def thinks high NK cells are my problem, and its related to me having Crohn's disease and not 'bad luck!'

She said ive got 40% chance of success by doing nothing and 60% by taking steroids, tbh i hoped it would be higher but as she said not every pregnancy is viable anyway.

She said im to take prednisolone 20 mg as soon as bfp and she will also give me progesterone due to 10 day luteal phase. I asked about taking steroids now and she said they used to do that but found it can make getting pregnant harder.
She also said no to aspirin as latest studies showed it did not help and people did better off it.

She did say at the end that she thinks i have a good chance so gives me a little hope to cling to, just gotta get that BFP now!!! :thumbup:

Have a great weekend all :hugs: xxx
 
Hi Lexi, that's all really good, so glad you got everything sorted out. I'm not sure about the making it harder to get pregnant bit as the other girls on here didn't find it harder but all these doctors say different things anyway! Dr s puts his patients on progesterone from bfp (i know you said you've been put on it earlier due to your lp) but i think it's best to take it from after ov anyway, i did!

Hello ladies spoke to Prof Quenby last night she was really nice and gave me time to ask ?s unlike the doc i saw at the recurrent miscarriage clinic!

She def thinks high NK cells are my problem, and its related to me having Crohn's disease and not 'bad luck!'

She said ive got 40% chance of success by doing nothing and 60% by taking steroids, tbh i hoped it would be higher but as she said not every pregnancy is viable anyway.

She said im to take prednisolone 20 mg as soon as bfp and she will also give me progesterone due to 10 day luteal phase. I asked about taking steroids now and she said they used to do that but found it can make getting pregnant harder.
She also said no to aspirin as latest studies showed it did not help and people did better off it.

She did say at the end that she thinks i have a good chance so gives me a little hope to cling to, just gotta get that BFP now!!! :thumbup:

Have a great weekend all :hugs: xxx
 

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