Theory: I have a theory about autoimmune disease... - LUPUS UK

LUPUS UK
24,243 members19,603 posts

Theory

I have a theory about autoimmune disease. It began to show up with vague symptoms mostly in women in the ‘70’s. Of course problems and patients have increased.

I read an article about why moving bus stops just 50 feet from the curb helps reduce toxins in the lungs.

We can measure pollution but not small particle air pollution. I could be having a conversation with you in public and I’m not breathing the same air that you are.

I want to see if I can get a team and a grant to begin to test my theory. Small particle pollution that builds up in the alveoli, bone marrow, and red blood cells.

I have to think of a way to build the science and lab. Im going to assemble my team.

Any thoughts?

85 Replies
oldestnewest

Why would the small particles affect women by 70 percent more than men? I have a theory very different. It is do to increased mental stress. Women continued to maintain the home plus began careers too for the most part in the seventies thus their stress levels doubled. I believe oxidative stress from small particles would make sense if men were affected at similar rates as women but I think the double stress of still being in charge of the kids plus holding full time careers is increasing our oxidative stress above healthy threshholds and it is at the expense of our health. Controlling high stress levels and treating traumas quickly are the key to prevention of disease.

11 likes
Reply

Stress is a killer. I am a 50 year old man lived in the country all my life ( less pollution) 3 years ago I was diagnosed with lupus SLE .

I was running a electrical contracting company 100 head of cattle farm . And play rugby.

Then my wife left me and my son 9 months later I was in and out of hospital.

Definitely stress.

Women have extra stress giving birth and having children and as you say working as well.

I don't agree with pollution theory.

Dave

5 likes
Reply

This doesn’t apply to all of us. I wasn’t stressed. It was the best time of my life. My life has been all down hill once my kids grew up.

Reply

Taken into consideration. Many people agree with you.

Women until recently are apt to work in smoke free environments such as schools and hospitals. There are def diseases reported more by women then men; there’s the issue of vague symptoms. Men don’t take care of themselves as well and are less likely to report vague symptoms. Most diseases are reported more by women. Hopefully men will begin to get help more.

Stress is def a compounding factor if not the cause.

Thank you. I’ll need to rule this out.

My premise is that the brain (amygdala and cerebellum) change first in this and then we have symptoms.

Thank you for your thoughts. Duly noted. Doaty.

3 likes
Reply

I agree it has so much to due with the amygdala and cerebellum. The amygdala is enlarged with high stress and white matter volume decreases as our body prepares to fight threats by increasing white blood cells, mast cells, and macrophages. Since there is no real threat just our preceived one those protector cells misread our own cells as the threat and destroy those as if enemies. Allergy, viruses, and cancer are also known to preceded lupus aswell because they set the white blood cells, marcophages and mast cells into action so yes pollution could do this too.

But I know first hand how powerfully my mindfulness has been in my own healing so I have been researching its effects. In multiple studies it has been seen that meditation and CBT training actually shrink the amygdala while increasing white matter in the cerebellum! I honestly believe this is why my white blood cells, Ana and Antiphospholipids are now all normal.

My layman' s explanation for what might be happening with some of us who had no virus first.

5 likes
Reply

Perfectly said. I appreciate your input so much.

Reply

going back to the seventies, men were more likely to be in the vehicles while women were more likely to be walking and breathing in the fumes.

I also remember frequently being sprayed by tractors as I cycled past fields, what was I breathing in and how might that have affected me?

3 likes
Reply

Exactly. The 70s are a very important component I think.

Reply

I think you are being simplistic - autoimmune disease has existed for far longer than that. There is evidence of some forms of vasculitis from artwork in the late Middle Ages and one in particular was first described in the 1880s. It required the development of technologies to differentiate between the various types and to also develop methods of management - which is why it appears there was little pre-1970. Previously people died young - now they live much longer and that also increases the incidence of many disorders.

13 likes
Reply

True. Thank you for sharing. I always have a historian on the team. I’ll have her look into the art and early events. That’s very helpful. Thank you 💛

Reply

Agree PMRpro, Healthcare has changed out of all recognition in the past 30 years. We can now define characteristics of disease better using auto antibodies, genetics and other blood tests.

What about children who develop auto immune disease? If we are all subjected to the same levels of pollution why do some develop diseases and not others?

Disease is multi factorial, answers and solutions need to reflect that. Auto immune diseases tend to be complex, they will never be explained by concentrating on 1 issue.

1 like
Reply

may be the same reason 2 lifelong smokers, one will die from cancer the other will stay healthy.

3 likes
Reply

Which proves the point that these issues are multi factorial.

1 like
Reply

I personally think it’s something to do with hormones. Maybe taking contraceptive pills, coils anything that contains hormones 🤷‍♀️

7 likes
Reply

It's funny you should say that as I'd had a bereavement many years before this - but no physical reaction, stress - no reaction but within a month of having the coil put in I started feeling ill and have not felt normal since. Had the coil taken out but I wonder if the damage is done so to speak. I've heard that the coil - the one I was on Mirena - can cause silicone poisoning. My boyfriend is convinced it's that. I'm wondering if I'm grasping at straws. I've had no recent bereavements, no real stress (or not more than normal although I was working hard), no illnesses, no viruses. Makes you wonder.

5 likes
Reply

Thanks for sharing. These are the things I’ll need to address. I’ve heard of people having trouble with that.

Reply

Now that you mention that....I had my IUD for 4 years until I started hemorrhage from it. The doc took it out, all my symptoms began afterwords. I never connected the dots.

Very interesting information!

3 likes
Reply

Thank you for sharing that. (I think my daughter would agree with you.)

Reply

I read an article about silicon poisoning - and other 'heavy metal poisoning' - I wish I'd saved it. basically saying that these can start off an auto-immune reaction.

1 like
Reply

Ahhh. I think that deserves a big section. You’re so right. Thank you!

Reply

Thank you for sharing. For so many it is endocrine based but what makes our hormones go so off kilter?

Reply

Maybe worth research into women who have never become pregnant first and see what percentage do and do not have an autoimmune response

Could it be triggered by the initial peak in hormones when a female becomes pregnant and the body some how does not cope well once the pregnancy hormones die off . Then we try and introduce artificial hormones then take them away again 🤷‍♀️

Maybe we don’t naturally produce enough hormones to stabilise our immune system 🤷‍♀️

I do know one thing and something most of my medical team agrees with, I have zero symptoms during pregnancy. A hormone specialist agrees auto immune is stable because the hormones reach their peak and stay consistent until birth , there is no peaks and dips in hormone levels.

To me our hormones are a big player in this, but of course this doesn’t explain these illnesses in men

X

2 likes
Reply

But men have hormones. We both have progesterone among others. Other than living longer (which is an excellent point) what are the ingredients that make our endocrine soup go wonky.

Interesting to note you’re fine during pregnancy. I wonder if we’re going by correct ‘normals’ on labs when I hear this.

Thank you for sharing. Good information!

1 like
Reply

Women are twice as likely to have anxiety disorders than men....

1 like
Reply

men make us stressed :)

7 likes
Reply

My disease hit one year after I delivered. And historically I had a VERY long standing history of PCOS and stage 4 of endometriosis. So I am thinking hormones played a big role.

2 likes
Reply

I have procs also xx

1 like
Reply

I've never had children and was too young to be affected by elderly relatives dying. Looking back I suspect I have had osteoarthritis since childhood [about 12 years old] I had hayfever and excema from about 7 years old then nothing until I was 25 when I got pleurisy shortly followed by ulcerative colitis. I think the minor stuff was hereditary which was triggered into something worse by being weakened by the pleurisy. the rest has followed. perhaps it is triggered by the body being in a weakened state whatever the cause. whether it is pregnancy or illness.

2 likes
Reply

I too have never had children. However my problems started when I was 49 and approaching the menopause, so possibly hormones do have a connection.

1 like
Reply

Thank you! I appreciate your input.

Reply

I also have not had children. This started late for me as well, at 47. However, just to throw a spanner, I had my ovaries removed at 43 and hormone levels of a 70 year old...

1 like
Reply

I debate the view about driving & working mothers, different life styles in different countries at different times, for example uk vs usa, woman were encouraged to drive in usa & driving lessons more available especially in the suburbs & lots of car manufacturing advertising to buy & cheaper petrol/gasoline....

Though around for many years, is it the triggers that need to be addressed? Or dormant causes - be it pollution, tramatic births, insecticides or any geographical clusters?

I have questioned my tigger which was UV light & was my reaction due to over exposure of a large amount mould spores prior to this? Or all of the above....

Glad your thinking of research ....ml 😊

3 likes
Reply

Thank you! Good points

1 like
Reply

Apparently there are many triggers for autoimmunity, including environment, diet, hormones, stress, heavy metals etc etc. I think pollution can be a cause and indeed could affect women differently (most experiments take the male body as the norm, rather than women, and women tend to have more fat which does affect susceptibility to toxins, I understand).

Autoimmune disease has been around for centuries, but there has been an explosion recently in some areas. However, we don't know if that's an increase in cases or an increase in reporting. I assume that, in the past, people would die of the symptoms of autoimmunity without knowing that they had it (e.g. strokes, heart attacks).

2 likes
Reply

Excellent point Treetop. Thank you!

Reply

Lupus was identified as a collection of symptoms around the turn of the twentieth century. It did not begin in the 1970s. Nor did Rheumatoid or MS - two other autoimmune diseases - both of which have been around for much longer.

I’m sorry - but I do think this is a non starter. Why not begin with google scholar to research the history of lupus?

2 likes
Reply
1 like
Reply

I did not mean to annoy you. I do neuroscience research. These kind people are giving me the factors I need to keep in mind while I write the grant and figure out parameters of testing neurologically centered.

The 70s is when nurses began to tell doctors of vague symptoms that doctors could do nothing about. Serum studies showed nothing at that point.

1 like
Reply

This does not agree with a report on a government site. It says lupus goes back thousands of years and was first called lupus erythematosus in the 1800s. So I think your saying the 70s is completely wrong. It’s just that medical advances still could not give any reason.

ncbi.nlm.nih.gov/pubmed/304...

2 likes
Reply

I’m not saying it started in the 70s.

Reply

No you were saying that’s when (to quote you) ‘nurses were telling doctors of vague symptoms doctors could do nothing about’. I’m saying it was noticed way before that and to think that there was a change in the frequency of the illness in the 70s is not necessarily right. It could just be due to medical advancements making it more apparent.

1 like
Reply

You didn’t annoy me. You asked for thoughts, and mine are as I said - I thought the research idea was a nonstarter for the reasons I stated. I made a suggestion about where you might start your research even without access to an academic library, and I offered an article that supports the claim I made about when Lupus was identified. I haven’t changed my mind. However, I wish you well in your endeavour.

1 like
Reply

I will have access to an academic library. I do appreciate your thoughts which seem to say no further research is necessary even the meta-analysis I’ll be involved in. I have to give my area of research while working at the Mayo Clinic as all academics do. Out of respect I asked how other people felt so I could be more comprehensive in my paper. I’m happy to read again about when lupus was identified although I’ll pass that on to the team medical historian. Our overall focus will be the markers leading up to the disease. I feel excited to go back to work finally and excited to get this project. I respect your opinion that joining this team at Mayo is a ‘non-starter’ but I do like research and I do enjoy paying for a roof over my head.

2 likes
Reply

I think the problem may be that you were not very clear in your initial post; it seemed as if you were looking for 'the cause' of lupus, rather than trying to identify another potential trigger (which is how it now appears - please correct me if I have that wrong). Of course I don't think that no further research is necessary. I didn't say that. I also did not say that going to work at the Mayo was a non-starter. If you don't have access to an academic library until you start your new job, google scholar can be very useful for background. Many academics use it. I hope that this post is clear and not open to misinterpretation.

2 likes
Reply

There is also the belief that auto-immune diseases are caused by a bacterial infection and there is a great deal on the internet about treating auto-immune diseases with long term, low dose antibiotics. My problems started in 2000 when I developed interstitial cystitis. I subsequently developed coeliac disease, followed by sarcoidosis. I was no sooner told that the sarcoidosis had gone than I was being referred to the Rheumatology Clinic with suspected lupus. I recently discovered on the NHS website that interstitial cystitis has an association with lupus. I am still awaiting a definite diagnosis of lupus but personally feel that there is no doubt that I have it. There is also a genetic link and my mother has rheumatoid arthritis. So there are lots of theories and lots of factors to be taken account of. I only wish that some scientist somewhere would figure it out and come up with a cure!

2 likes
Reply

Good points. I’ve had lengthy discussions with cohorts regarding bacterial encounters and genetics. Thank you for responding.

Reply

I think it’s multifactorial. My symptoms started 9 years ago after a pregnancy. I have a friend who also developed AI after a pregnancy. Yes, men have hormones but levels are different. I’d be curious to see a study connecting estrogen and progesterone levels with AI.

And yes, stress. Stress throws hormones off and unbalanced hormones cause stress.

I agree with Treetop that numbers haven’t risen we’ve just been made aware with more testing.

2 likes
Reply

Good points. Thank you!

Reply

I appreciate everyone for your input. I believe I’ll begin my grant writing now.

I did not in any way mean to offend people. I needed help and your point of view. I don’t believe in not going to the source.

I don’t like to hear ‘no one asked me’ or ‘we’re ignored and we’re the patients’. I think I would be disrespecting this group of people if I did not get your point of view. I appreciate everyone who had something to add. Doaty

2 likes
Reply

I’m sorry I forgot to write ‘current history’ (the 70s) by a well known study done that showed AI problems were all but unreported for many years probably due to the medical profession ignoring them. However the upsurge in the 1970s brought the symptoms back into the light.

Sorry everyone who had AI problems during that time period who are all now dead and to everyone offended by my lack of perfection.

However I do thank those who gave me their thoughts on parameters. Everyone complains the patient doesn’t get listened to.

I’m going to work at the Mayo Clinic. I need to write my grant. I appreciate you.

1 like
Reply

I wish you every success with the grant. It was good to read all the comments and I for one am always happy for more information. Only people with similar auto immune issues understand.

I have R.A.,Sjogrens, Reynaud's, Hashimoto's, and something unrelated (or is it?) called Orthostatic Tremor which makes day to day living very difficult.

I have always blamed extreme stress and trauma for the latter. Would love some answers of course.

All the best! from Sekka (Australia)

2 likes
Reply

Thank you Sekka. I will do my best for you and I’ll keep you informed. Please take good care of yourself. 💛

Doaty

Reply

I don’t think we can quite yet rule out pollution as a one source. Part of the study is already the plastic particles in fish which we now eat because of the time it takes down to break down in the oceans. Too many immunologists already take this into consideration for me to leave this out.

There is also the known physiology of TBIs link to AI.

I think stress is the thing that pushes our systems over the edge. Whatever gets you close is now shoved on in because of massive wicked stress. It’s entirely physiological and destroys us. Some people get cancer, some people get an AI, and some of us get both.

I appreciate the men speaking up. Thank you gentlemen.

1 like
Reply

I've had both. Stress was well involved with my autoimmunity. The cancer was genetic.

Good luck with all of this!

Panda x

1 like
Reply

Thank you Panda.

Reply
HiddenThis reply has been deleted

Why are you trying to argue? Secondhand tobacco is part of small particle air pollution. Thank you for referencing me to myself making me unsure of your motives. I wrongly assumed we all wanted to get better. One of you gets off the hook for blasting me by saying it’s my fault and you want to argue with my words.

I really thought I’d get some good input from people who would like to say something about their own thoughts and I appreciate those who could do that.

Reply
HiddenThis reply has been deleted
HiddenThis reply has been deleted

I think there has been ample research in the relationship between smoking and autoimmune disease. It may be pretty well established that smokers have a high incidence of lupus.

1 like
Reply

That’s true Kay. I’m not in charge of this. I get to participate as a second neurobiologist. I have to add what I bring to the grant.

I don’t think smoking is good for anything. Both my parents smoked in the house and car with us kids. That was the times. It also gave me a patent foramen ovale that made me have strokes at age 33. My mom feels so guilty.

I appreciate your input as always Kay!

Doaty

Reply

Really? My mom smoked a huge amount, and I have a PFO. I did not know there was a connection. Good to continue to look into causes of autoimmune diseases!

K

1 like
Reply

I had a pfo with an atrial septal aneurysm, the combo most attributed to migraine with aura and cryptogenic young stroke. I had the pfo closed after my second stroke and have not had a migraine with aura since. I also,within a week of closure, was far less fatigued. There was a lot of promise years ago with a pfo cfs connection but it went nowhere.

Wonder if there is more of a connection to be found. My parents did not smoke though.

1 like
Reply

That’s interesting. Thank you for sharing. I did not have mine fixed. I still suffer with migraine. My body is in a double blind study though so I chose not to. I should have picked Door A so I wouldn’t have headaches!

Reply

Another possible factor is diet. Even 60 years ago there were no supermarkets and most people did not have fridges and certainly no one had freezers. Women went to the butchers, the fishmonger & the greengrocer and bought and cooked fresh food more or less every day. So everyone ate fresh, unprocessed food daily. The advent of the supermarket (and the freezer) changed peoples diets forever. Most people today eat frozen microwaveable ready meals and frequent takeaways. All of these are full of artificial flavouring/colouring and preservatives. Could this be a link to the increase in auto-immune diseases? I have very recently started the AIP diet (auto-immune protocol). This is based on the Paleo diet which involves eating only natural unprocessed foods, organic where possible. I found an almost immediate improvement in my migraines but it is too soon to say whether I will see any other changes. On the internet some people have reported significant improvements on the diet. I am not totally convinced but thought it was worth a try. Even if the diet does not work miracles, I still feel that a healthy diet will contribute to general well being. I would be interested to hear if anyone else has tried the AIP diet and what their experience was.

3 likes
Reply

Thank you for sharing. I agree with you.

There’s a product added to all citrus drinks that is literally wood pulp. It stops the drink from separating while on the shelf. Humans can’t process wood pulp. How many other ingredients are in our processed foods?

Reply
HiddenThis reply has been deleted

Thanks for the article.

Reply

Let it go dude. Relax. I’ve already got the job. I have info from other scientists. I wanted patients opinion. Let. It. Go.

2 likes
Reply

You may also like...