[sweetsixty]

Hi Dolly,

It’s all very relevant but an awful lot to digest (excuse the pun lol).  I’ve not even heard of methylation so that’s a whole new area for me to research. It may take me some time to to look through all of this. Yes I’d appreciate the DM of the FMP you found especially as Herefordshire is probably the closest to me. Grateful of any info in this area you are happy to share.

Thanks again dolly I’m going to stop giving up and try again. I had thought that at 67 it’s just too late for me but you’ve given me some hope that I can at least have a go.
FYI yes my trauma was from a baby and my story is a long one. You’ll find the outline of it amongst the personal stories on this website.
Sweetsixty xx

[Bermuda]

Absolutely.

I have reactions to most drugs, pharmaceutical or otherwise. I have also researched it a bit. I have always had trouble with anesthesia, and have always told doctors up front, and they seem to shake it off as if I am exaggerating when I say that it doesn't work on me. Well, a few years ago I had to have an upper endoscopy, and I told the doctor that I will be awake but not to worry I'm not squeemish. The doctor was in a panic because as he told my husband who was in the room during the procedure, he had given me enough drugs to knock out everyone in the room and a baby elephant and that he legally could not give me more. Long story short, doctor said afterward that I have something called a paradoxical reaction to anesthesia. That got me on a research kick, and it actually seems to be something not too uncommon with those who have trauma disorders. Interestingly enough, if I were at a party in my youth and took recreational drugs of the relaxing sort, I would never be the one relaxing. I would always be the one cleaning up and getting people drinks.

When it comes to other sorts of reactions, I have allergies to several antibiotics and if there is a rare side effect to anything I will get it. There are also studies showing how trauma effects your developing immune system, and I do have two autoimmume diseases and also autoimmune eczema and figure that has something to do with my body's hyper responsiveness.

[dollyvee]

Thanks for sharing Bermuda - I wonder if your nervous system is reacting differently because of genetic activation in the TH1 and TH2 nervous system. I don't know much about this, but just speculating.

Sweetsixty - Ha! Yeah there is a lot to consider. Like the article below says, these things are big tangled knots. I had a quick look and apparently methylation is not involved in drug metabolism, but perhaps a genetic mutation would trigger some of the reactions? I get that feeling...I've been putting off some testing and talking to my GP about things because I'm so tired of hearing there's nothing wrong. It's just a reactivation for growing up and not having a voice. Hope you find something in that research xx Have DM'd you.

This is an interesting overview of MTHFR and HLA gene differences and the implication. My FMP was talking about mold and will have to dig out my 23andme and see if I have the HLA mutation. I cut out gluten for about 7 years now and it's helped my overall health a lot. I can seemingly eat it now in small amounts but not 100% sure about that. Apparently there is a link between gluten and autoimmune conditions and have long wondered if I have some obscure undiagnosed autoimmune condition. Testing shows my folate quite low as well (in a functional sense) but could be due to malabsorption with SIBO.

https://www.genesisperformancechiro.com/blog/2020/8/31/a-tangled-mess-addressing-the-knots-of-autoimmune-conditions
https://www.drchelson.com/articles/nutrition-nutrients/leaky-gut-mthfr-and-digestive-enzymes-1
 

[dollyvee]

Hi all,

I just logged into my 23andme account and saw that they have a new "Pharmacogenetics Report" which looks at how your body might process certain medications. It's an extra service or £19/year I think though in addition to initial genetic test. I thought it might be relevant to some of you if you're interested though don't know how in depth it goes/what's included.

dolly x

[dollyvee]

After talking about the genetic link, I was interested in looking more into the info I got three years ago. You can take your raw data from 23andme and upload it into various other genetic apps/programs which sort and categorize it for you. I used Promethase and Genetic Genie.

https://promethease.com/
https://geneticgenie.org/

Promethase is not that user friendly but gives all the breakdowns and Genetic Genie gives you your methylation and detoxification panels. I think I need an intermediate to advanced organic chemistry course here, but am trying to make headway. Also, I think even if you have one gene susceptible to something doesn't mean there's other genetic factors or the right environment for it to be expressed.

I thought I had an issue with methylation and coming back it seems that even though I don't have red, there's a lot of yellow. As I understand, a lot of the methylation process is involved in the manufacturing of neurotransmitters, elimination of hormones etc. Certain bacteria like H Pylori (which I had) can cause "hypermethylation" where it uses up all the folate/methyl donors that your body needs for the methylation cycle, causing detox issues. Low B12 and folate can be a sign of this.

MTHFR C677T is the "big one" that can cause "impaired function of the enzyme can cause or contribute to conditions such as Autism, Chronic Fatigue Syndrome, Fibromyalgia, Miscarriages, IBS, many birth defects, Multiple Sclerosis, Alzheimer's, Bipolar Disorder, blood clots, Stroke, Chemical Sensitivity, and many other conditions." There is also a link between this gene and the development of a major depressive disorder later in life. Apparently, according to the Dr. Axe link, certain antibiotics can also deplete low folate levels and interfere with the methylation cycle further.

https://draxe.com/health/mthfr-mutation/
https://advancedfunctionalmedicine.com.au/b12-deficiency-and-mthfr/

COMT is another interesting one where "This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens. COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, it has been clinically observed by physicians that people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They may also be more sensitive to pain."

CYP1B1 showed up in my detoxification panel as homozygous (red). Looking into it a bit further, it's responsible for the metabolism of steroids. So, perhaps the strong reaction to steroids could be down to the individual makeup of this gene? I'm not sure as I don't think I've had any steroids since my ventolin inhaler as a child. Homozygous or +/+ is apparently a fast metabolizer although I'm not 100% sure of all the factors influencing this. Some of the supplements in the article below might slow the enzyme activity as well. The Zyflamend seems interesting in reducing overall inflammation.

https://supplements.selfdecode.com/blog/cyp1b1/

This is also a good link between drug interactions and methylation:
https://mthfrgenehealth.com/wp-content/uploads/2016/04/Drugs-medications-methylation-MTHFR.pdf

Maybe for you Sweetsixty - a link between epilepsy and MTHFR:
https://www.liebertpub.com/doi/abs/10.1089/neu.2011.1982?journalCode=neu

Looking at the links, it does seem like the symptoms are still split between "psychiatric" and "physical." The only research paper I could find linking MTHFR and early childhood trauma was one that showed a connection between trauma, MTHFR C677T and an increased likelyhood of a major depressive disorder. I haven't found anything between trauma, MTHFR and an increased likelihood of physical problems. Although, it was implied in one article.

Interested to hear about others experiences with genetics and physical symptoms.

[sweetsixty]

Hi Dollyvee,

You’ve obviously done your homework in this area, wow, that’s a lot of research.  I really don’t blame you going down this route as very few medics really get it. If many of these are genetic, can we really change it?  I know we can maybe avoid things that may tend to encourage the gene expression but there must be a limit to this. Or at least we may not be in a position to fully understand that yet. Pharmacokinetics is a really interesting area and that’s the area I researched for my reaction to pain killers. That’s to do with the way the liver metabolises drugs and is also an good area to look at.  These are a simple introduction.

https://www.uspharmacist.com/article/pharmacogenetic-testing-and-opioids
https://www.pharmacytimes.com/view/2008-07-8624
https://www.genomind.com/360/an-introduction-to-pharmacokinetics-four-steps-of-pharmacokinetics

I really can’t find a link here to trauma just to genetics.

I think what I was really trying to establish is if others with a trauma background have the same issues and how they cope with them. My problem is often how to talk to medics about things. In this story I had a great reaction from medics but that isn’t always the case.
https://www.outofthestorm.website/guest-bloggers/2018/11/17/trauma-illness-and-medics-my-non-phobia-by-sweet-sixty


MS is regarded as having a familial tendency and it’s certainly true that my sister also has it. I’ve been checked for H. pylori and it’s not an issue for me. Also although I’ve taken a PPI for quite a while I don’t have low magnesium, B12, folate, Vit D or anything else anticipated with that.

I’m also lucky that I don’t suffer with depression, some anxiety but then who doesn’t with a history of trauma.

I’ve not had steroids either so I don’t know how I might react to them. Thank you for the links again, I’m still working my way through the others too. There really is a lot of work in these I really appreciate that.

My epilepsy is connected to my MS as I have lesions in the areas that can produce seizures. Every time I’ve had a seizure I’ve also had a relapse with it. 

Maybe the link between trauma and physical and psychological issues is as simple as inflammation? It’s certainly a link they’re seeing more and more related to diet. I cut out gluten a very long time ago but I now eat very few carbs as that has helped with my gut issues and also with my MS. I’ve also lost 4.5 stone that way and my blood results are always good since swapping out grains, sugar and seed oils.

Thanks again Dollyvee
Sweetsixty.

[Bermuda]

I think what I was really trying to establish is if others with a trauma background have the same issues and how they cope with them.

Well, how I cope has changed a lot over the years. I'm not sure if this will be helpful at all... I think we live in a world where we're made to believe we are in control of/responsible for our own health. I had to let that go because it can become maddening and simply dangerous. During my lowest health point I was grasping at straws and trying anything, and as sad as it sounds, now I just accept that I am not 100% and that it also can't be explained away like many others' illnesses. I think of health as a spectrum, and I for as long as I can remember have simply been unlucky.

In the past when I spent so much energy trying to explain things to doctors, research possible causes, and speculate... It caused me so much more pain and suffering.

I eat mostly healthfully, don't drink etc., and just try to be mindful of not being too mindful, and allow myself to have days when I simply can't go on as usual. No justification necessary.

[dollyvee]

Hi Sweetsixty,

The link between childhood trauma and illness shows up in epigenetics tags related to methylation. I read It Doesn’t Start With You which talks about generational trauma and how these things are passed down genetically to a degree via non-encoding DNA. So, while it is genetic there is a chance to change it down the line. One of the genes related to methylation, MTHFR C677T had been shown to have a direct link to later onset depression as well as the characteristics I posted before. The link between trauma, methylation and physical health is there, but I don’t think there’s a paper saying if x happened, you will develop these symptoms. There’s a part in the article below that talks about the HPA axis, stress and methylation. It’s quite dense but basically goes into how long term stress affects the methylation pathways.

https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00808/full

If you know that you have the MTHFR mutation, or some of the other detoxification mutations, there might be something you can do to support it perhaps.

Ah I understood it as a new thread where Kizzie wanted you to share your adverse reactions to drugs as she was currently experiencing a reaction to steroids, and explore that as a possible link to childhood trauma. But it is a fascinating area and I’m sorry that you all have to go through that.

That’s great about the gluten. It’s helped me so much. I’m cautious about “normal” blood tests unless they take functional levels into account. For example, I was told that my iron was fine as the range is something like 15-125. Mine was 17 and the level you need for proper hair growth is 70. But you’re already aware of functional medicine so are probably looking at the right ranges. I’ve just been told so many times that my test results were fine and I knew there was something off.

Thanks for starting the thread - it’s actually really helpful for me to go back and look at those results.

Bermuda - that’s a really great way to approach it, to take the extra time on yourself when you need and to not be hard on yourself about it.

[sweetsixty]

Thanks Dollyvee,
I know all this research has taken you quite some time. Yes I am looking at the right ranges and I’m very aware of how they’re not always what our docs tell us they should be. I am looking into having another go with a functional doctor.  As I explained to you the last one I spoke to told me that I shouldn’t waste my money as my knowledge and the way I implemented that was the ideal for me.

Yes it’s sad that there are so many of us on here. I’m glad the thread I started helped in a small way.  I hope it’s helped others that have read it too. Especially as you’ve been so generous sharing your research and your experiences.

Bermuda: I agree that your approach is a great way to go. I try to take an approach whereby I attempt to educate docs by being open about my drug sensitivities and how that has exacerbated my CPTSD, but they don’t all react well. Although it is getting better.

The work I did with my T helped lots with that as I was able to drop the toxic shame which stood in the way of me telling others about it.

Great discussion. Thanks
Sweetsixty

[dollyvee]

Hi Sweetsixty,

Yes, this discussion helped renew a kick in looking into this stuff and think am making headway a bit with what's going on. Also, it could be that it's helping to look at my trauma in a new way.

I don't know if you've come across this but it's been very interesting/in depth looking for getting genetic information and associated conditions:
https://www.amazon.co.uk/Genetic-Testing-Defining-Personalized-Health-ebook/dp/B07BVWYXGD/ref=sr_1_4?crid=TH6VBGTWLVQ4&keywords=genetic+testing+defining&qid=1647256310&sprefix=genetic+testing+defining%2Caps%2C129&sr=8-4

Looks like I'm hugely susceptible to inflammation, which creates cytokines and can cross the blood brain barrier. Also, have a couple links for anxiety and inflammation which means a genetic susceptibility to increased anxiety with inflammation. All these make sense as a kid growing up with allergies and asthma, especially as chronic stress is a trigger for these conditions. 

Hope your search is going well,
dolly

[Gromit]

I posted something about my reactions to medications on a Facebook page and asked if I should have one of those medic alert items, necklace or bracelet, probably a capsule in my case so that I can add to the paper inside and the responders said yes.

However, I feel really odd about it. My mother had one because she could not have penicillin. I feel if I suddenly started wearing something like that it would draw attention to me and I hate attention. I just imagine the responses, ‘oh, look at you, flaunting your issues’ . I have all the information in my ‘phone under emergency medical information but actually wearing something which advertises the fact is something else. I know, last time I went into hospital for a procedure they gave me a red name tab because of the issues I have with certain medications, but that was just for surgery, where it matters.

I mean, I try to tell myself the reaction I had to codeine, whilst I was in ER was really scary, but it is not like I have been unconscious anywhere other than hospitals. I fainted in one last year when I took my son to have his nose set. They did not check my phone or anything they just lay me down and gave me water until my BP was stable.

Please advise, should I get one or not?

G

[Armee]

I can't advise, because I have the same problem Gromit. But maybe if I tell you about mine it'll clarify for you what you should do for yourself?

I have an allergy that can result in anaphylactic shock and death. I sort of self diagnosed and just informed my doctors and never saw an actual allergist.

I finally did see one 25 years after it started, because I wanted advice on truly how much I needed to limit my activities to avoid the allergen (I was seeking permission to do more and trying to convince myself I was just being a baby).

His response was that no I absolutely could not do those things and to get a medical alert bracelet, especially important because emergency surgeries could expose me to the allergen. (Weirdly, the allergen is cold temperstures). That was almost a year ago and I still have not gotten one for exactly the reason you mentioned.

Well actually I am not even sure if it is the attention I am afraid of or looking like I am looking for attention. Both are horrid.

I think I know what both of us should do. They have necklaces and other jewelry that is more discreet but I don't know if medical personnel would recognize it as an alert. But that would probably help.

[Gromit]

I can't advise, because I have the same problem Gromit. But maybe if I tell you about mine

Well actually I am not even sure if it is the attention I am afraid of or looking like I am looking for attention. Both are horrid.

I think I know what both of us should do. They have necklaces and other jewelry that is more discreet but I don't know if medical personnel would recognize it as an alert. But that would probably help.

Yes, Armee, it is exactly this, both are horrid and you put it better than I did.

I had a reaction to the AZ vaccine last year, my tongue felt weird, for a couple of days, it was a struggle to talk, but no one at home noticed and I did not seek further assistance, although I did log a Yellow Card. Then, when it came to having the second dose of vaccine I mentioned it to the people there and the doctor was called, and said it might be more dangerous for me to have a second dose than it would be for me to have Covid, so I would have to have a different vaccine, and I was given it in a different room to everyone else, as I had had this reaction. My OH didn’t take it seriously, he hadn’t noticed the tongue problem, I do not talk a lot, and, because it was difficult, spoke even less. He was more perturbed because I had not said I was going for the vaccine, I really didn’t want to have it, partly for the reactions I get to things. Once this stuff is in your system you have to suffer the symptoms until they leave your system, and you do not discover the effect until you have it.

I am glad I am not alone in feeling this,

G

[Gromit]

And now I have asked a friend about his wife, she is diabetic, and does not have any medic alert jewellery.  She also seems reactive to medications, recently having to spend an overnight stay in hospital, because of a reaction to some medication the doctor gave her, her own doctor. And, normally they also give her a red wrist strap as an inpatient.

?
G