I feel like giving up on life

[antherder]

So if I silenced a gene via methylation, can I even change it back? Ugh I feel like dying I can't take this anymore

@Konflict, the genetics specialist at UCSF will be able to answer this. Have they given you a time frame of when your appointment will be?

As you can see from all of the responses you've had, we care about you here at PR, Konflict. Please try and hold on. The fact that you have been referred to a specialist is a huge step forward, and I know how hard it is to wait, but as you say so yourself, you don't know for certain what is causing your symptoms, and that means your condition might be treatable.

 

[Konflict]

I honestly don't think they'd believe me, I think they'd find it impossible that it's the estrogen receptor from vitamins...idk how I'd get them to do search what I want.

 

[antherder]

@Konflict, your doctor believed you enough to refer you to the specialist though. He wouldn't do that if he thought there was nothing wrong with you.

 

[Shoshana]

@Konflict

I am so sorry you are suffering so, and having this downhill slide.

I wish you could find a doctor who would truly help you.
We all care about you.

And your mom too.

 

[Konflict]

@Konflict

I am so sorry you are suffering so, and having this downhill slide.

I wish you could find a doctor who would truly help you.
We all care about you.

And your mom too.

Thank you. Idk how much longer I can hold out. My skeletal system is completely deteriorating, and to me the only answer is I "knocked out" my estrogen receptor....or altered the gene expression with the vitamin E I took as it messes with gene expression.

Idk if there's such a thing as treatment for it, I don't think there is a treatment to turn genes on. I'm sitting next to my mom right now I feel so bad.....

 

[Gondwanaland]

http://www.raysahelian.com/schisandra.html
Schisandra supplement emails
I am researching taking schisandra, and see that it increases estrogen receptivity. This sounds like something to be avoided if one has had type breast cancer; whether or not cells were found to be estrogen-receptive. Yet, I see no warnings in the literature.

It's really difficult to make any firm statements regarding the long term effect of an herb on the human body based on a laboratory study of what an herb does to specific cells to what it would do in humans after digestions, absorption, and modification. Herbs considered Phytoestrogens may have some estrogen-like activity, but in a subtle and usually non-harmful, non tumor-stimulating way.
_________________________________

I would like to know if schizandra herb has potential to cause one's immune system to attack the thyroid to a greater degree in those with Hashimoto's, as I would like to try it. Also it is stated that schixandra can irreversibly inhibit CYP3A4. Is that a permanent effect? I ask this because I do take diazepam, and it is broken down by that particular isoenzyme. I do know that schixandra inhibits CYP3A4 but can't imagine it being permanent. Could you clarify please? Your answers to my questions will be taken as your opinion and nothing else. I fully understand that there are no definitive answers yet, and that everyone's physiology is different and will experience different results.

I don't think it is a permanent effect. Thyroid schisandra search on Medline did not reveal any studies regarding the influence of the herb on the thyroid gland.

 

[adreno]

My skeletal system is completely deteriorating, and to me the only answer is I "knocked out" my estrogen receptor....or altered the gene expression with the vitamin E I took as it messes with gene expression.

I would look for an alternative diagnosis. There is no way in hell taking some vitamin E would cause "your skeletal system to completely disintegrate". If that is really the case, then something else must be wrong. If you are blaming some vitamins, I think you are barking up the wrong tree, and missing something else important.

 

[Konflict]

I would look for an alternative diagnosis. There is no way in hell taking some vitamin E would cause "your skeletal system to completely disintegrate". If that is really the case, then something else must be wrong. If you are blaming some vitamins, I think you are barking up the wrong tree, and missing something else important.

If you read earlier in the thread I've also had side effects from saw palmetto for the last 6 years, but those were more androgen deficiencies....and you really can't say no way in hell.....people have adverse reactions to everything. Read up on how vitamin E works on the estrogen receptor, I was also taking methylated vitamin Bs at the same time as the vitamin E, possibly I switched some genes while I on them and felt overmethylated for a week.

But really dude, you cannot say no way in hell. If you were truly that smart to say 100% of the time vitamins cannot screw someone up, then you'd be a doctor or scientist. Read up on how vitamin E alters estrogen receptors gene expression.

 

[adreno]

But really dude, you cannot say no way in hell. If you were truly that smart to say 100% of the time vitamins cannot screw someone up, then you'd be a doctor or scientist. Read up on how vitamin E alters estrogen receptors gene expression.

I can say no way in hell. Or, at least you would be the only case in recorded history. There is nothing in the literature that suggest that vitamin E can have such devastating effects. If your symptoms are as serious as you say, it is not even remotely likely that vitamin E is the culprit. I think you are wasting important time by fixating on this idea. Have you seen any specialists, a rheumatologist for example? If no, that would be first on my list.

 

[Konflict]

I can say no way in hell. Or, at least you would be the only case in recorded history. There is nothing in the literature that suggest that vitamin E can have such devastating effects. If your symptoms are as serious as you say, it is not even remotely likely that vitamin E is the culprit. I think you are wasting important time by fixating on this idea. Have you seen any specialists, a rheumatologist for example? If no, that would be first on my list.

Look how many people are here that doctors don't believe....and they are 100% honest? They work for big pharma and the network they belong to. Look up how many men have been ruined from saw palmetto. I've read people who took too much Zinc and had severe sides.

If if was that easy to see any doctor, I would. I was denied a rheumatologist referral because none of the blood work was "relevant" for it to be autoimmune according to my crappy general physician. I was lucky enough to see an internal medicine specialist who saw how hypermobile some of my joints had become, so he wrote me a referral to a geneticist, which I'm assuming will take 6-9 months to see.

Medical is all politics.....have to have the right insurance, income and location to get what you want. I'm on a free insurance for my low income status, so I can't really get shit I ask.

 

[Konflict]

Thank you for that post, it is something very much worth looking into @Gondwanaland

 

[adreno]

If if was that easy to see any doctor, I would. I was denied a rheumatologist referral because none of the blood work was "relevant" for it to be autoimmune according to my crappy general physician.

It's unfortunate if you can't get any referrals. Can't you try another GP?

 

[Victronix]

Looking through here, I didn't see if you are seeing any type of therapist. Stress has a role in epigenetic changes and just the act of talking to someone in a focused way, like therapy, can really release stress you've been holding, particularly when you have pain.

The other benefit of it is that it's one thing you can check off the list when they try to say it's in your head -- you are already doing all that you can with "your head" so now the ball is back in their court. Any doctor will breathe a sigh of relief if you ask to see a therapist since they have no answers in their toolbox. That also creates a better relationship with them -- you have given them the belief they convinced you of something.

When I was on a wrong Synthroid dosage at one point, I had nonstop anxiety and was soaking the bed in sweat every night, waking every 2 hours all night. even though all my labs were normal -- naturally, doctors were frantic to get me on anti-depressants (eventually I saw an endo and she checked my reflexes and was shocked at how high my dosage was), which I didn't do, but I relented and did the prescribed anxiety talk therapy. It was helpful -- the woman LCSW was a breast cancer survivor, so had an understanding of illness-related anxiety -- and it created a situation where doctors could no longer point to my mind, and ultimately, that helped, I believe, for them to be forced to relent when I pushed for a new endocrinologist, who gave me my life back.

Kaiser was horrible, but the benefit was that you could drop bad doctors over and over and over, from one week to the next, and just keep moving on until someone listened and got it.

 

[Konflict]

It's unfortunate if you can't get any referrals. Can't you try another GP?

I think it's more the network of hospitals....some have money to afford to help people with tests that might not be expensive, some just can only give the bare minimum.

 

[Konflict]

Looking through here, I didn't see if you are seeing any type of therapist. Stress has a role in epigenetic changes and just the act of talking to someone in a focused way, like therapy, can really release stress you've been holding, particularly when you have pain.

The other benefit of it is that it's one thing you can check off the list when they try to say it's in your head -- you are already doing all that you can with "your head" so now the ball is back in their court. Any doctor will breathe a sigh of relief if you ask to see a therapist since they have no answers in their toolbox. That also creates a better relationship with them -- you have given them the belief they convinced you of something.

When I was on a wrong Synthroid dosage at one point, I had nonstop anxiety and was soaking the bed in sweat every night, waking every 2 hours all night. even though all my labs were normal -- naturally, doctors were frantic to get me on anti-depressants (eventually I saw an endo and she checked my reflexes and was shocked at how high my dosage was), which I didn't do, but I relented and did the prescribed anxiety talk therapy. It was helpful -- the woman LCSW was a breast cancer survivor, so had an understanding of illness-related anxiety -- and it created a situation where doctors could no longer point to my mind, and ultimately, that helped, I believe, for them to be forced to relent when I pushed for a new endocrinologist, who gave me my life back.

Kaiser was horrible, but the benefit was that you could drop bad doctors over and over and over, from one week to the next, and just keep moving on until someone listened and got it.

I would be open to that, but unfortunately my network got rid of insurance covered therapy....it's all out of pocket here. I feel like this network I'm stuck on is only qualified to treat the common cold, and they are told to save money for all the pregnant women and illegals who use the ER for regular appointments.

 

[Konflict]

I just never thought I'd experience death at age 30.....it entirely seems like my entire body system is shutting down rapidly. No cures to fix vascular connective tissue disorders, especially those that develop acutely. Wow, I can't believe how incredibly unlucky I am .

 

[Shoshana]

@Konflict

Is there a way you could find out when your appointment could be, how soon it could be,
with that next doctor,
in case he can help you?

We do care about you.

You are right, it isn't fair or good. You are young,
and your mom too.

 

[Tunguska]

@Konflict You're welcome to PM me if you want (response may be delayed, sorry), otherwise I don't get the impression I'm helping you. I do know what you're going through, and it's because of that, that I already know nothing I can say emotionally will make it better, and that's the truth. The only difference is in my very worst (of more than one) related experience, I already knew the cause and it was about as bad as it gets, whereas - for better or worse - you still don't know yours.

antherder was probably the closest to a useful suggestion. It's because in strange cases like this, it could trace back to liver issues, and ceruloplasmin is one real tangible link. It even relates to estrogen, which I thought you'd entertain, but I guess not.

Again the rheumatologist is a good thing to visit at some point if you manage a reference, but it has to be a competent one; it matters.

 

[Tunguska]

I seems like I'm "floxed" although I didn't take cipro.....can you get floxed from overmethylating?

No. The fluoroquinolones damage the liver, and they upregulate the MMP enzymes that break down collagen. Probably to a greater degree than you ever could from methylation supplements or anything else. The closest thing you mentioned that can do this (to a lesser degree) is the ibuprofen, but afaik it never causes extreme reactions unless it's combined.

 

[JaimeS]

Take care and good luck.

@Research 1st this is why people come to PR. Well-done.