Posts made by notmcas

@mostlylurking Yes, I just thought that with a trial dose I could prove to the doc that my "dangerous cholesterol" would improve with some thyroid. I know I have to keep taking it at least until I detox from pufa and my diet is good, it's more to convince them to allow me to keep using it. I did reach out to a functional doctor for us both so fingers crossed.

@notmcas Thank you, I can't say that the vaccine has made her any worse really since before it. But someone else was very affected.

I more meant that maybe a doctor could give a trial dose. But I think you have to be an MD to prescribe both NDT and synthroid. I will try through the Acella doctors or pharmacy though, maybe my dad get get it at least since his temps and pulse are so obviously low.

@mostlylurking she’s gotten the first vaccine, and I’ll just say it did not go well. I didn’t get it but schools were forcing it and all that. She’s never gotten silver fillings as far as she knows.

I’m in MA. I will try that approach, hopefully they’ll at least let me try some. I tried with thyroid online doctors and they refused under 5tsh too. I’ve actually felt pretty good on some NDT I ordered but I just don’t trust those non prescription products to be good.

@mostlylurking She has not removed all PUFA but doesn't have silver fillings. I think mold might have been a big contributor since she's lived in moldy homes and has flare ups before rain or after snow melt. I'm not sure what to do for mold toxicity at this point though. It was why I was considering the flowers of sulfur as per ray's suggestion for candida or fungal infections.

For the doctor issue, I mean I've tried another and a few online doctors. They basically say if tsh is not above say 4.5 or 5 they will not consider any treatment. Even when I asked my primary care if I could pay out of pocket for a thyroid test he got angry with me and said I didn't need that and prescribed me statins that I refused. I guess I could try an endo?

@mostlylurking That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...

@Ecstatic_Hamster Couldn't you dissolve the cbd+thc in tocopherols and avoid the whole suppository? My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?

@mostlylurking I'm surprised that they'd give you such trouble at a total of 236. Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young. I was able to game tests by upping selenium, vitamin A, and taurine pretty high but they still just call it a fluke and won't consider any kind of thyroid which I bet would lower it. My dad has the same issue of high cholesterol and temps around 95-96 and doc is constantly threatening statins and yelling at him, his tsh is about 3.8. Did you have to have an over range tsh to get thyroid? My temps are okay if I eat often but drop otherwise so I suspect low sustaining t4.

I remember Ray saying something along the lines of vitamin e products not being as good anymore. I’m not sure where the one in progeste e is sourced from because that could be useful

@mostlylurking Have you had any experiences with sublingual thiamine to avoid risk of digestive upset? I know it’s not fat soluble but maybe it could work in a ethanol solution or something?

@frankincense I’m suspicious of mycotoxins for sure. But the tests aren’t very accessible, I have to argue with the doctors to insist they do them. They seem to not want to test anything.

@mostlylurking Thank you, I'm very keen on her looking into the high dose thiamine, she's tried ALLITHIAMINE(TTFD) before for a few days but didn't notice anything substantial and stopped, maybe hcl is the best route.

I think a full estrogen test is definitely warranted in these cases. Unfortunately it's not an uncommon a story anymore, and even more unfortunate is that doctors seem pretty unwilling to order a test for even estradiol at least in the US. I think I want to order one for total e, estradiol, and progesterone. Another big thing is that progesterone can remove estrogen from the cell/tissues but like you noted it's possible to get a detox reaction from the freed estrogen especially with an impaired liver.

Maybe I'm wrong on this but it makes me think that to detox from estrogen quickly someone would want to take some calcium d glucarate since attaching glucaronic acid to estrogen is how it's made water soluble and excreted in the urine... and to either so something like a milk fast prior to this to heal up the liver or take an aromatase inhibitor to block some of the estrogen activity while detoxing similar to how bodybuilders will use PCT's?

@mostlylurking I’m always a bit nervous about multivitamins, I’m relatively healthy myself but sometimes I’ll try one and I get an absolutely horrible reaction. I’ve tried brewers yeast with boiling water and it was much more tolerable to me but still I prefer to just drink lots of milk with liver and shellfish. But I think she might need doses that aren’t realistic with food. Maybe a month retreat to a high altitude cabin is good for people too

@shedim I’ve read about that theory before. Supposedly supplemental glycine could offset the glyphosate. Have you tried this or has your improvement stuck around after returning to your typical lifestyle?

@mostlylurking I had a talk with her and I think as long as I’m always supportive it’s something she’ll try after. But she wants to try only a small bit on arthritis flare ups first before on the gums or systemic. I’ll leave her to think about it herself and what she wants like you said. I have couple bottles of progest-e if she ever wants to try

@notmcas Yes the baths. She's in her early 20's. Like I said though I agree with you and I've listened to those 3 myself already and tried to get her to and will continue to try to get her to listen to and read up on it. I just want to make it clear that I've listened to hundreds of hours of Ray's interviews and read his website. I'm not dismissing anything you say, I just literally can't make her do something if she's unwilling to, and the moment the prospect of a normal period comes up she won't even consider it. No she's not a lab rat(and the reason is she does show clear signs of mold exposure, Ray made it seem that a pinch of flowers of sulfur is very safe), which is exactly why I can't just make her listen to something or take progesterone. The only reason she's willing to try those things is because there's not the same risk of causing bleeding. I'm not trying to be mean or anything I'm just saying I don't have the means to get her to be interesting in progesterone, I try all the time and I'll keep trying to get her to listen with me and to be open minded. I mean the improvements she's made have made her a little more open minded so I'm hopeful that she just needs a little more to consider the progesterone even if the risk of a cycle exists. I'll talk to her more about it, at least I convinced her to not think about surgery for a while. I really really try my best to get her to look into it. I promise I’ll keep insisting she listen with me, I just know that with every improvement she makes she’s more willing to consider it. Anyway I really appreciate the info, I want nothing more than for her to feel better but ultimately she has to be interested in it too, maybe with time she’ll look more into it

@mostlylurking Thanks I’ll avoid the flowers of sulfur. I know Ray has suggested it for fungal overgrowth for a couple days and she’s had mold exposure

I personally do not tolerate magnesium glycinate it destroys my stomach. She seems to like epsom salts. Maybe the thiamine is the best first thing to try. I know you mean well but you have to understand she is just not open to the possibility of having periods, even if I told her they won’t be painful the trauma is so bad that I could pay her a million dollars and she’d refuse. The only way is if something like the theamine lowers her pain to the point where she’s a bit more open minded, OR if the progest-e works the same daily to prevent any bleeding. I mean I’m desperate at this point just understand that no matter what I say or she listens to that if getting a painful period again is on the table she’s out. So I’m really grasping for straws. The carrot, Cyproheptadine, and aspirin have at least helped along with vitamin d.

I really appreciate the help I’m just saying I’ve wanted her to try it for over a year. She’s beyond traumatized by the week long heavy bleeding and agonizing pain. I know the stuff is bad I just have no way of getting her off without her feeling better first. The only other option is to surgically remove it which is a last resort to me.

@notmcas According to wikipedia norenthindrone has 150% affinity for the progesterone receptor. I'm going to assume this is what's having the main effect in preventing the egg from fully developing each month. I assumed that if she takes 1.5x the progesterone of the norethindrone daily that it would work the same to prevent periods.

I already know the norethindrone isn't safe but she says she can't stand the periods no matter what. I want to just give her some to see during a flare up but I'm afraid it will interfere with the norethindrone and cause a period? It's really challenging to make suggestions when the person is traumatized by horrible pain that started early so I'd essentially have to promise her that the progesterone will keep the cycle from occurring. Otherwise she'll stay on it and have to try something else like the thiamine until hopefully she's feeling well enough to change her mind.

@notmcas Shes on norethindrone only. I know they're estrogenic but no periods are a such an extreme non negotiable for her with how painful they are. I'm very hopeful on progesterone doing it as well, I'd just take her current daily dose of norethindrone, see the affinity and try to match it with a similar dose of progesterone. The problem is I haven't seen any information online if that actually does stop the cycle like a progestin and haven't seen anyone claim it works?

For the detox I think carrot salad and something like calcium glucarate I think is good. Like you can probably imagine she's actually had worsening symptoms from suggestions like SSRI's from doctors so her patience is extremely low right now so I can't comfortably push her on anything that could make her worse. My current ideas are to try some colostrum and flowers of sulfur for the digestion a few days, and then unless that works great(in the case of maybe fungal growth) then I want to explore the very high dose thiamine along with magnesium(if it's an important cofactor). If that makes a substantial improvement then I think she'll be more open minded to progest-e. Again the cycle is the main thing holding her back, she's mortified of it returning so I'd just need to know that progest-e can do it just like a progestin.

@mostlylurking Well I've wanted her to take progest-e for some time. I use it in small doses as a male and like it a lot. The problem is shes on birth control to not have a period because it was so painful. If I knew cycling progest-e would also prevent it I could convince her. She's afraid that supplimenting progest-e could start the cycle again. Although I thought that at a constant dose daily that it should suppress the cycle just like her progestin? If that were the case she'd just take it now. I'm sure it will help because she feels by far best on a barbiturate which activates the GABA system, so I assume the Glutamate/Gaba balance is really bad along with MCAS causing these random flare ups where everything is inflamed. The flare ups are most common before rain. Carrot salad has helped the digestive pain.

I guess other options are dhea and pregnenolone which she's more open to trying. I've thought about brewers yeast as well for it's nutritional content but I'm afraid of gut irritation or too much estrogen. Shes young and very depressed about the situation, and I don't want her getting too used to barbiturates or prednisone already.

@notmcas Again thanks for the info, I've looked through a lot of those. I should actually mention this is my girlfriend who's having these issues I'm just looking for her. Are you a woman? It seems like it's almost always women who experience the chronic fatigue, pain, migraines, etc from EDS or similar issues. I'm going to assume that the unopposed estrogen is causing a lot of it since a lot of people improve on testosterone.