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Why does pregnancy often banish CFS symptoms?

Messages
59
This is very intresting for me, i read on this forum about MS patients having fewer flares while pregnant, especially in the last three months of pregnancy. this is apparently true of all autoimune diseases. i talked to my mom and dad ( both gynocologies) and they said that they had seen this themselves. but they were unsusre why, like rick they discussed the increase in blood, changes in the immune system, and hormonal changes. We found on this forum a paper on an new study that they were doing on MS patient and the drug trimestra, we found the active ingredient to be estirol, and since it is a drug that has no side effects (as little as any drug can have:) we decided to give it a try. i have been on it for 3 weeks, and it has been the best three weeks since i got sick. i know it is too early to say anything but i have some hope.

the only problem was that i went off LDN to take this drug and i coudn't walk anymore, if i stood up for more than 5 min or walked for more than 100 meters I would feel like shit, cold sweats, malaise, dizzy, i think other people with CFS have this (Orthostatic intolerance?) and i had always been so happy that i was spared...

but so far i am happy with my new drug!
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi Rich,

Of the 70 percent of women who don't improve during pregnancy, do you know how many just remain the same, and how many actively worsen?

My CFS because far worse when I was pregnant. My health basically took a nosedive from which I still haven't recovered six years later! I used to get out of relapses and crashes using certain strategies (rest and diet mainly) which had worked for years, but after my son was born, these things just don't do it any more.

I am wondering how your glutatione theory woudl fit with this scenario... BTW in case this is a useful clue, I have discovered that I cannot take folinic acid even at the normal daily minimum dose, I think that suggests a specific blockage in the cycle somewhere doesn't it? But there are many other substances I cannot take either which make me feel poisoned, mostly herbal medicines.
 

richvank

Senior Member
Messages
2,732
Hi Rich,

Of the 70 percent of women who don't improve during pregnancy, do you know how many just remain the same, and how many actively worsen?

My CFS because far worse when I was pregnant. My health basically took a nosedive from which I still haven't recovered six years later! I used to get out of relapses and crashes using certain strategies (rest and diet mainly) which had worked for years, but after my son was born, these things just don't do it any more.

I am wondering how your glutatione theory woudl fit with this scenario... BTW in case this is a useful clue, I have discovered that I cannot take folinic acid even at the normal daily minimum dose, I think that suggests a specific blockage in the cycle somewhere doesn't it? But there are many other substances I cannot take either which make me feel poisoned, mostly herbal medicines.

Hi, Athene.

No, sorry, I don't know how many remain the same.

On the folinic, I have heard this also from Freddd and a couple of others. I think it may be possible that some people have polymorphisms in the MTHFS enzyme (not to be confused with MTHFR). MTHFS is the only enzyme that can convert folinic to other forms of folate. If it is slow, folinic can build up, and it then inhibits the SHMT reaction, which puts a monkey wrench into the folate metabolism.

The best way to check whether the GD-MCB hypothesis is relevant to a given case is to run the methylation pathways panel from the European Lab. of Nutrients in the Netherlands or the Health Diagnostic and Research Institute in New Jersey, USA.

Best regards,

Rich
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Dr Myhill said to me she thought the key with progesterone (why sometimes it made people feel better) was its immuno-suppressive qualities and it bathed the brain in sugars. She does not recomend it. I am now perimenopausal and test very low for both progesteron and oestrogen. I also have osteoporosis. I was just about to start progesterone cream and an oestrogen enhancing supplement, but if I have read Rich's posts right, this may actually work against me. One day something about this damn disease will be straightforward.
 

richvank

Senior Member
Messages
2,732
Dr Myhill said to me she thought the key with progesterone (why sometimes it made people feel better) was its immuno-suppressive qualities and it bathed the brain in sugars. She does not recomend it. I am now perimenopausal and test very low for both progesteron and oestrogen. I also have osteoporosis. I was just about to start progesterone cream and an oestrogen enhancing supplement, but if I have read Rich's posts right, this may actually work against me. One day something about this damn disease will be straightforward.

Hi, Sian.

Progesterone would probably be O.K. It can help with excitotoxicity, for example. I'm not sure how you would respond to enhancing estrogen. It depends on whether you have certain polymorphisms in detox enzymes, in particular CYP1B1, COMT, and one or more of the GST enzymes. In lieu of testing, I suppose you could try it and see how it goes.

Best regards,

Rich
 

penny

Senior Member
Messages
288
Location
Southern California
That's very exciting Alexa!

I was wondering, are you taking trimesta or estriol, and at what dosage? Also, why did you discontinue the LDN, is there a contraindication between the two?

Thanks and I hope you're continuing to do well with the new medication.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi, Sian.

Progesterone would probably be O.K. It can help with excitotoxicity, for example. I'm not sure how you would respond to enhancing estrogen. It depends on whether you have certain polymorphisms in detox enzymes, in particular CYP1B1, COMT, and one or more of the GST enzymes. In lieu of testing, I suppose you could try it and see how it goes.

Best regards,

Rich

HI Rich,

Low b12 cuts hormones. In males it can cause a crash of testosterone. How much change there is in females I can't tell you but it affects sexual functioning and reproductive funtioning in various ways. It is progressive so early on the symptoms are mild and limited getting worse over time. I don't know how much if at all this might be part of what is occurring here. When people are b12 deficienct for long enough some speak of the "release" of "storage" b12. Well that occurs by tissue breakdown, most notably muscle. Does tissue breakdown happen duing pregnancy with these problems? So no answers but a a couple of questions.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
I have recently read that women with chlamydia pneumonia (which I have) get a worsening of symptoms during the luteal phase of their monthly cycle, because progesterone increases the production of porpyrins, i.e. the secondary porphyria that chlamydia pneumonia causes.

Well, I always feel like "Death on holiday" during this phase and also did so when pregnant, when progesterone levels are high.

So Sian, perhaps you would feel worse on progesterone if you have chlamydia pneunoina, but OK if you do not. And that may possibly be the answer the question as to why some women feel worse when pregnant rather than better. I don't know how many PWCs have chlamydia pn, but I know a decent proportion of us do. And the test produces a very high rate of false negatives, so the number who actually have will certainly be higher than the number who know they have it.
 

allyann

Senior Member
Messages
418
Location
Melbourne Australia
As an update, I am in the 39th week of my pregnancy and during the last few weeks my blood pressure has increased - 145/95 so I have been put on medication.

I actually feel the best in regards to cognitive functioning and brain fog levels that I have felt in the three years I have had ME/CFS. I have also only had only one cold/sinus infection during my pregnancy.

My thoughts are that improvements in pregnancy are due to blood flow changes and immune changes.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
"That's what I suggest goes on. I don't doubt that the increase in blood volume during pregnancy also helps. And not having to break down and get rid of estrogen every month would also be a big help, because, as I suggested in a 2007 IACFS poster paper, I think this is what causes CFS to be more prevalent in women than in men. Those who inherit certain polymorphisms experience redox cycling when their bodies are disposing of estrogen, and this biases them toward oxidative stress and glutathione depletion, which I've suggested is what leads to the onset of CFS in people who are genetically predisposed."


Dr. Vank....If there was a way to stop or slow down estrogen production, would that help with symptoms or make things worse??
 

Emootje

Senior Member
Messages
356
Location
The Netherlands
I think that allopregnanolone plays a major role in ME/CFS improvement during pregnancy.

Allopregnanolone is a metabolite of progesterone and a potent modulator of GABA-A receptors. It decreases baroreceptor sensitivity, norepinephrine, anxiety, pain and it increases blood volume.

"In conclusion, we have found that chronic administration of the progesterone metabolite pregnan, at a dose designed to achieve plasma levels characteristic of midpregnancy, causes increases in NO biosynthesis and plasma volume of a magnitude typically observed during midpregnancy"
http://ajpregu.physiology.org/content/280/6/R1902.full.pdf

In MS:

"The findings also indicate that allopregnanolone and perhaps other neurosteroid-like compounds might represent potential biomarkers or therapies for multiple sclerosis"
http://www.ncbi.nlm.nih.gov/pubmed/21908875

Dr. Chris Power - M.S. Media Event
http://www.youtube.com/watch?v=6cDtmk38fB8
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
One of the things I suggest to folks over 45 or so is pregnenolone and/or DHEA. Some get considerable relief and sometimes even a sense of well-being from these.
 

Nielk

Senior Member
Messages
6,970
One of the things I suggest to folks over 45 or so is pregnenolone and/or DHEA. Some get considerable relief and sometimes even a sense of well-being from these.

Hi Fredd,

At what dosages would you recommend it? Is ther a test one can take to see if they are deficient with these?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd,

At what dosages would you recommend it? Is ther a test one can take to see if they are deficient with these?

That is very difficult to say. I would suggest a trial at several doses and see if anything makes a difference. These are slow to work generally. The one most noticable effect from the pregnenolone is said to be a mild sense of well being. Pregnenolone is one step towards hormones from cholestrol. DHEA is further along the chain towards the sex hormones. I suggest for those taking it to research it carefully and decide for themselves. I take 100mg of prenenolone daily, having worked up from 25 and 25mg of DHEA, both without food. I also am prescribed and use testosterone and am tested regularly. The years of deficiencies, or something, totally trashed my hormones.
 

Nielk

Senior Member
Messages
6,970
That is very difficult to say. I would suggest a trial at several doses and see if anything makes a difference. These are slow to work generally. The one most noticable effect from the pregnenolone is said to be a mild sense of well being. Pregnenolone is one step towards hormones from cholestrol. DHEA is further along the chain towards the sex hormones. I suggest for those taking it to research it carefully and decide for themselves. I take 100mg of prenenolone daily, having worked up from 25 and 25mg of DHEA, both without food. I also am prescribed and use testosterone and am tested regularly. The years of deficiencies, or something, totally trashed my hormones.

Thank you, Fredd for your reply. It sounds like we have to be our own guinea pigs and become very knowledgeable about biology and physics which is pretty hard when one is walking around in a fog. i understand though. There is no straightforward answer and our bodies all act and re0act differently.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thank you, Fredd for your reply. It sounds like we have to be our own guinea pigs and become very knowledgeable about biology and physics which is pretty hard when one is walking around in a fog. i understand though. There is no straightforward answer and our bodies all act and re0act differently.

Hi Nielk,

I'll be a whole lot more definite about vitamins and minerals and such. Those are far more straight forward and account for 99% of the benefit. These hormone precursors are more like frosting on the cake and aren't the major cause of either major problems or cures in most situations. By the time you are looking for where your next improvement will come from you will have already picked all the easy fruit and recovered enough to evaluate it. You will do best looking for the 99% solution first. However, you do have to be your own guinea pig. I maintain that the active b12/folate protocol is a general cure for CFS/FMS in many, but not all, people, many others will tell you why is shouldn't work according to their hypotheses. Only you will be able to tell for yourself by trying it. And considering that this thread is about pregnancy and supplements, I would advise AGAINST any hormone precursors for any pregnant or hoping to be pregnant, lady or anybody under 40 or so.

There are thousands of things that won't work to heal CFS/FMS. There are hundreds that will affect symptoms in various ways. There are only a handful that lead to a potential cure. When nothing works pretty much equally, all sorts of ideas and theories proliferate, most of them wrong or side issues. I'm willing to hand you what I think is the most likely cure. It isn't easy to do all the way since to many it seems horribly counter intuitive the instant the startup effects start. Good luck.