There appear to be so many possible causes for conditions that ALL fall under autoimmune diseases.
We treat symptoms and not any root cause. Because its not possible? I find it strange that no studies were done to find root causes. Conclusion maybe as simple as "those who had MMR between 19xx to 20xx" ! Or had xyz before travelling or blood type plus exposure to xyz.
Guess the list of combinations are endless but someone should start investigating somewhere surely!
Why antibiotics help some autistic patients.
Why these so called age related conditions are happening to people in their 20s! Why cancers are so common.
All very strange!
No idea what my cause is, but do now know one factor that triggers it and so have managed to control flares and even wean myself off most of my RA medication over a period of 4 months. (All meds had very bad side affects for me).
During my quest for alternate natural ways to heal, found some that are working (in progress) I came across this video by Dr Tent yesterday. It starts off slow but is quite a shocker.
I decided research and "listen" to what my body was saying was the wat to go.
Maybe this info will help understand and make sense of what might have happened .
Many others out there Dr Mercola, Dr. Bergman etc who talk about a downward spiral due to meds. I certainly felt my body was being forced to shutdown.
Science has not advanced enough to know everything and main stream Doctors are trained in treating patients with predetermined medicines dictated by Government's and Pharmaceuticals.
Often they contradict themselves years later after what was prescribed wide spread.
Half the time we don't know whats in our food, GM or not, really organic? Pesticides, chemicals etc but then we are quite happy to have a pill that is not a cure and has multiple side effects, can cause organ failure, heart attacts and does not even claim to ease the pain temporarily let alone cure anything! even the literature says that they don't really know how it works!
Oh well...thats my rant for the day. Hope the damage done is not too bad and reversible eventually.
Hope this gives food for thought and incentives to share alternative treatments too.
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rubina786
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There is much reliable scientific research going on in the field of autoimmune disease. You cannot cure any disease until you know what is going wrong in the body - and there are many different places for such things to occur. Slowly, with the advent of monoclonal antibodies they are able to attack specific diseases at the pathways that have gone haywire.
While it is extremely likely that our modern way of life contributes to us developing a/i disease there is no way we can avoid what has already been created. Man has definitely fouled his nest - and now has to live in their own mess.
But this sort of "medicine" is not the way to go - it causes harm too,
Northwick Park was a perfect storm that was almost entirely down to ignoring guidelines. They used 10 people all at once - should do one person at a time - and used far too high a dose for that stage. You start with a tiny dose, if that is OK, you try a tiny bit more. They didn't have the right ICU cover available. It was being done in a private facility. It was a disgusting exhibition of how not to do a clinical trial. It isn't the first time that researchers have done sloppy work because of over confidence and caused severe injury or death to the subjects. Once before it stopped all work on genetic medicine for 10 years.
But no - just because they are called biologics, which suggests to the uninitiated they are "natural", they are never going to be fluffy bunny drugs. However much experience they have with them they will throw up curved balls every so often - but then, so do ibuprofen and co.
Mercola et al have their wares to pedal and to me their theories stink of pseudo science for profit.
I agree with PMRpro. Whether it’s Big Pharma or the alternative ones you mention - I personally don’t really subscribe to either camp or any who stand to profit hugely from our poor health by promoting their ideas, food products, diets or pills. I think we are still a very profit driven society where health is concerned.
For me personally - I researched my own history and came up with very credible reasons why I’m an autoimmuner and why my son has Aspergers. Autoimmune diseases are far too complex to be refined down to any one trigger such as eating gluten or breathing polluted air or mercury/ amalgam fillings.
Yes its far to complex Wonder if civilization who do not have modern technologies (phones, laptops, microwaves, wifi) gm foods, vaccines, processed foods etc etc all the rest of possible suspects...are healthier ( "The good life" type of people who live as "naturally" as possible) ....What percentage of their population contract such ailments would be interesting to know.
Our next generation might be worse off in terms of health sadly if something is not done.
Each case is so different its really hard to know what to do so many possible combinations. My spreadsheet of foods abd tests is growing very large!
Trying to be positive helps, prayers and mindfulness. I have tried a tens machine, hijama (cupping) and reflexology... a raw food diet, fasting and can manage to stay off methotrexate, Hydroxychloroquine and Sulphasalazine so far (3 to 4 months) which I am amazed at and feel so much better physically, mentally and emotionally ...so am convinced I must be heading in the right direction. Hopefully! Skin, hair and nails recovered. Blood tests better.
Lost faith in modern meds totally Don't even take pain killers now.
Have watched youtube videos on them. I think I have always been an Amish at heart! Love their life style. Simple and close to nature and probably very healthy! Sadly never met an Amish.
I too started off dismissing Mercola on the basis he had things to sell. But have found a great deal of really useful info on his site. It's your choice whether or not to buy any supplements but ask yourself whether truly you are improving with all of big pharma supplied drugs you are taking.
When you reach a decision on that one, you will be better placed to decide if there may be better ways ahead.
Like most of what I read I have a (healthy) degree of scepticism. I’m not on any DMARDs just now and often have periods over the past 8 years of taking only Levothyroxine. But, apart from AdCal d3 I haven’t actually benefited from any supplementing or the heavy duty AIP type diets that these pseudo scientists often swear will be our cure.
I think we all try to tweak and balance and listen hard to our bodies and the messages they give just as you tell me I should. That’s why I’m off Mycophenolate!
It just makes people who have opted for powerful drugs for their cancer, Lupus etc feel really guilty when Mercola etc bang on about betrayal. I prefer less evangelical sources.
Personally I am no longer prepared to clutch at things that I can’t prove or disprove so I wouldn’t waste my very precious time or energy on watching videos of these people. After all I don’t watch videos of doctors espousing their medicines - and “showing amazing results in just 90 days” makes me deeply suspicious! It all reminds me of these TV evangelist preachers and I’m not religious so I dislike anyone who makes these kind of cure claims. But if they work for you then it’s probably because you choose to believe them. I only choose to trust and believe in myself.
And if I find something that works for myself I would never presume that it would work for others. Medicine should always be personalised rather than generic.
Also, you have said that you aren’t a scientist, so why try to dabble in either science pseudo science? Just keep a notebook diary and try one thing at a time to see if you feel better or worse. Autoimmunity often remits and relapses so you can’t actually know unless there’s something you consistently couldn’t do that you can now consistently do.
This may take up to six months of trying each new thing to know if the lifestyle or dietary changes you have made are actually working or if it’s the placebo effect or happy coincidence. The trouble with RA is that it can potentially do a lot of damage in the early stages. This is the reason why many with RA decide to take the drug route - because they can save your joints. The proof is that, before DMARDs, hospitals were full of patients with excruciating deformed hands and other parts. Now we rarely see this happening.
We may not be scientists but we can be methodical and rational in the way we follow our instincts.
True, I can't prove or disprove but keep an open mind and watch hoping to gather things to try being a complete novice when it comes to foods.
Wish someone would invent "breatherlizers" or home unine, blood test type tests to check if certain foods were helping or not so it would not be such a long winded process. Wishful thinking
My monthly blood tests do look promising so can't be too far out. Plus out of a zimmer frame and able to DIY etc so on the right track for myself (I hope).
The greatest problem with the supplements is that they are not tested nor monitored during production. The one thing you can be sure of with Big Pharma drugs is that they are subjected to controls during development and manufacture and from that side are safer than a capsule from China with god knows what in it.
Some years ago a miracle supplement, all natural of course with no steroids they said, was on the market for rheumatoid pain in particular. Many people found it very beneficial, their pain improved, and there was a lot of talk about it. But luckily the Danish government was even more sceptical than me and bought samples from t'internet and analysed them.
It turned out these capsules had very very high levels of a natural corticosteroid, together with some very dodgy contaminants that were likely to cause some nasty effects in the long run. So - not only "no steroids" but downright dangerous too.
As far as I'm aware there has been no proven recorded deaths due to supplements. I agree with rubina786 that the pharma drugs are more risky. In certain cases they may be required , it depends. However ,if I buy a supplement from a reputable brand I have no concerns.
"As far as I'm aware there has been no proven recorded deaths due to supplements"
That is an exceptionally sweeping statement. You do what you wish to do - and for many supplements there probably are no problems. But there are many things available on the internet that could contribute to the deaths of patients who take them inadvisably. But they might not realise - so of course there are no proven recorded deaths.
I personally have been helped by them. I used to sleep most of the day without them. As I said I go for reputable brands anyway. I've had some horrendous side effects from pharma drugs though like rubina786 😣
Thank you for your confidence. 😊 I have no scientific or medical background just trying to learn and share what I can, mostly use 6th sense, gut feelings, bit of logic and lots of hope in that there MUST be something better surely than the meds we are given.
Wanted to grow old gracefully not suddenly in 3 days! Was a shock! Still every cloud has a silver lining...just need to persevere a bit more. Am so glad I took the risk to try something different.
Even if its fatal for me, I still feel its worth it and better than the multiple drug induced ailments I landed up with last 2 years!
(Not recommending self medication) My RA is concerned...my GP is happy. Blood tests will be even better next month God Willing!
I've had lupus for the past 30 years with no symptoms except a rash on my arms I don't suffer from the joint pain or any other ailment pertaining to lupus. I was diagnosed 3 months ago with leukemia so now I have a double whammer guess I got to deal with what life throws at me and try to make the best of it.
There are many pharma drugs that are removed from the market after many people have had serious side effects and/or died. To claim otherwise is misrepresenting the true picture.
If that is aimed at me then I wouldn't disagree at all. However they are drugs subject to the governmental reporting systems. Supplements don't usually come under that.
There is less - I'm not going to say no - corruption in the countries with socialised medicine. Often the system contributes to the problem - large negotiating bodies rather than small individual insurance companies have far more clout. Which is why most drugs in the USA cost far far more than here in Europe.
No, I am advocating no modern medicine (having trusted and landed up worse off). Trying alternative healing methods and no drugs to suppress the immune system. I thought I was getting into conspiracy theories but frankly speaking the more I look it to it the more I am finding that I am not the only one suspecting these meds make us worse.
Deseases are morphing... none of the trials can include all combinations so one thing that helps one condition ruins another and the cycle continues so took the risk to stop all but a few for the drug induced heart attack...only time will tell if I can remain without them. Will try my best. Re grouted half the bathroom today so must be doing something right
I watched The video. It maybe explains why doctors ask if you have suffered from one virus or another in the past. Years back my partner bought the book, Dr Mary's Monkey but even though I found it mind blowing I never got round to reading it entirely. Dr Tent references this and offers potential links between viruses and auto immune conditions and the explosion in cancer.
I now need to read in new avenues to decide if I think it is all credible. Worrying indeed if it proves reliable.
But isn’t it like reading about world politics and war torn regions - you can’t actually do much to stop it yourself as the world is full of plastics, chemicals etc that we breathe in or drink daily? A lot of the improvements and cures these betrayal people blog about and write books on is pure conspiracy theory that gets us not very far and is a big worry to many of us.
Of course viruses are often responsible for triggering autoimmunity - this is hardly a revelation?! But so anxiety about things we can’t change, which acts as a further trigger if we are predisposed.
If people are cured, as testimonials often suggest, then I believe it’s usually through the power of the mind - which is a very big power indeed. Not by taking a supplement or trying a diet which could actually do harm? AIP diet really did my body harm. So did taking extra Levothyroxine, T3 and B12 I think - all as advised by thyroid/ betrayal people.
Buying and reading these books is just wasting our precious funds and very limited energy. I’m not a scientist so can’t refute what I’m being told by the likes of Mercola. Are you a scientist or medically qualified? If not how can you know whom to believe? Some write nonsense compellingly whereas others report pure science boringly. It’s all too easy to get swept along by the messianic writers in my opinion.
Listening harder to our bodies and instincts about them is the best I think most of us can do.
Of course I think about this!!! Easily as much as you do I’m certain. 4 DMARDs have caused me severe allergic reactions as a highly sensitive Sjögren’s sufferer. As I’ve said I view Big Pharma with the same sceptism as the betrayal ones. I think medicine is still a very hit or miss affair and am all too aware of the potential risks. From my experience of these HU communities most people with autoimmunity do. No one takes immunesuppressants lightly.
The thing I will not do or keep quiet about is evangelising to others about drugs harming us or supplements or lifestyle changes helping us. We should each stick to our own research and not make others feel guilty or self harming for the decisions they take. I feel very passionately about this. People here are sometimes advised that they need these drugs to save their lives. No one should make them feel bad for their decisions.
There’s no harm at all in coming here and saying “I feel turmeric/ green mussel/ B12/ CBD oil, Raiki” have helped me greatly” or “I feel Methotrexate is harming me”. But I don’t like being told to mistrust the medical profession per se, take these drugs, take these supplements or to “think about it”.
In common with most here, I think about it all the time!
We are each unique and these generic, pseudo science videos aren’t going to be part of my own journey. I do read up but only what I can a) comprehend and b) I feel I can trust. So I don’t read learned papers on T and B cells or anything involving maths and chemistry because I wouldn’t be able to support or dispute them. I didn’t study science and am not about to start now. The only thing I can do is listen to explanation of experts and trust my instincts on that basis. No one knows or will take care of our bodies as we can. Most clinicians would agree I’m sure!
I only read some of Mercola’s blogs the once because someone posted one of his diatribes about Big Pharma on an HU community and I wanted to make up my own mind. I couldn’t dispute or agree because I don’t know enough science but I dislike the guilt he instils through his anti drug rhetoric and the “healing” goo and other products he sells online.
Similarly I watched some of the Betrayal series until I had to pay.
I use Dr Google same as most of us do so have learned to decipher what I can and can’t trust. Most here get used to the “well meaning” cider vinegar brigade throwing this kind of stuff at us often in form - healthy friends, family and colleagues - or those who had a brief skirmish with a condition which has miraculously remitted due to green mussel oil. There’s enough guilt in taking prescribed medications anyhow without promoting this here and fear mongering.
Ps my breakfast consists of organic porridge, koko milk and a glass of organic cider vinegar with beetroot juice. My day continues in this vein.
The thing about Mercola and his tagline Take Control of Your Health, it should mean something different to everyone anyway. But it is a reminder that we are all potentially the best guardian's of our own bodies as we live with them 24/7. We know how we feel much better than a doctor who may be able to empathise but is never truely living what we are living.
Maybe there are people out there who would not use judgement and would follow things they read to the letter and they could endanger themselves. But what is society to do. They are probably allowed to cross roads on their own so how far do we take the protection thing.
Truth is pharma is not working for vast numbers of people. That is the regulated option that receives all the government approvals. Our choices of alternatives are being eroded.
When I first became ill I only knew about conventional medicine. I had watched various medical dramas where the lead doctor would move mountains to save their patients. I gradually learnt the difference between medical fiction and real life.
Medical bureaucracy often stands between best possible treatment and what's allowed. Big pharma is a profit making machine even in countries with socialised healthcare. Government funding does not support anything other than pharma based healthcare.
Big pharma would not make money if people weren't sick and reliant on regular repeat prescriptions so what's the incentive to look for cures. There's more profit in producing drugs to mask symptoms rather than cure.
I am not saying that there are not extremely caring staff in the health service. I have met loads of them. But the system often hinders them as much as many patients.
I am not suggesting that anyone should follow my lead, but I do believe they should be able to make that choice for themselves, if they feel that there may be better or complementary routes that they wish to pursue.
To remove that right would condem many to stay sicker than they need to be.
I think I should also note that if anyone was to look for alternative routes they do need to be prepared to educate themselves and not expect to follow things to the letter from just one solitary website or book.
How did the AIP harm you? I have been doing it and I don't think I have found any benefit (minus the nightshades and eggs). And I am concerned about the weight loss as I have already lost too much weight.
It seemed to worsen my existing GI problems (slow transit dysmotility) and make me feel nauseous 24/7 and made my blood sugar spike and plummet. I have Sjögren’s with severe neuropathy and total loss of taste and smell so need foods with strong taste. Just ended up with extreme sugar cravings and started to hate all meat and sweet potatoes and certain textures of food. Just longed for our homemade bread and a bowl of lentil soup!!
Totally understand the feeling of the cravings! I have been trying to be creative. Every weekend I make new recipes...but still bored. Have not had those detrimental effects as you. Sorry to hear that....
Something to research... when my pains started 2 years ago, I was unable to get an appointment at my old surgery for 3 weeks.
The pain was so bad, was desperate...it was in different places and would suddenly disappear and land somewhere else on an hourly or daily basis... like it was travelling in my blood stream. To cut a long story short I took antibiotics which I had left over from a trip abroad (won't state the name here in case its not allowed) but believe me that got rid of the pain within a few days!!! as I was scared to take more I stopped and relied on doctors.....but this fact haunts me ...why would an antibiotic work for Rheumatoid Atheritis!!!...unless... doctors are diagnosing some conditions incorrectly...or this is a possible alternative treatment! Maybe new research will prove "monitored" long term antibiotics can work in some cases!
Still got mine in case of an emergency!
Admittedly I self medicate at my own risk. Have no one to worry about me or be worried about and after what I have been through, concluded that I prefer to make my own decisions, choices and mistakes...only myself to blame.
It is certainly possible that a doctor can misdiagnose a condition (connective tissue diseases are very complicated) or could miss something such as an infection. Did you mention that your symptoms improved with the antibiotic? It could help your doctor if they have all of the information available.
I would urge extreme caution about taking antibiotics without the supervision of your doctor. It could result in antibiotic-resistant infections that would be much more difficult to treat.
Yes, symptoms disappeared and did mention it but it was ignored. Probably because it was in the same sentence as having had "Holy Water" !!!
I still think I could not have survived the pain without having done that and that I would have been worse off as I was not treated for nearly 5 weeks since the pain started! I am scared of medicines so not likely to do it again.
The leaflet within the antibiotic box did actually say it was to treat Rheumatoid Arthritis.
I seem to heal quickly now from colds, cuts and fatigue etc and only a slight pain in one wrist. Hope to have a review this month with blood results and maybe that can be more conclusive.
Antibiotics may be prescribed in some cases of arthritis. If you want to read more about this, there is an interesting article here - arthritisresearchuk.org/art...
Excellent. Saved it for my bed time reading. Maybe my dilema on why antibiotics worked in my case will get answered.
I did not realise this was a charity that did research too. I support Cancer Research and BHF and would like to contribute to Lupus and RA research too.
Yes, a lot of what is written is so, I am sure. My symptoms all started after my health was messed up in hospital with surgery, the wrong diagnosis and drugs including 2 courses of a broad spectrum antibiotic that I should not have been given with penicillin allergy. It wasn't infection at all, but pieces of dressing stuck in side me for 6 weeks after the dressing pack was withdrawn. Blood tests showed so many things wrong after that, which I didn't have before including anaemia, Hashimoto's, thrombocytosis, asthma, to name just a few.
I came off all drugs and went complementary and am still here after 18 years despite being given little hope by the conventional medical profession. Most people die from what happened to me, but my immune system went hay wire after that and I have to manage it, but no drugs or antibiotics for 16 years now and I don't trust doctors any more. I trust my body and listen to it using muscle testing taught by an expert in health matters. I am afraid there are few of those in the conventional system and they often don't stay or keep quiet for fear of losing their jobs. I had too many vaccinations in my life, too, and too much conventional intervention where changes in lifestyle and diet could have helped including coeliac which was never diagnosed, so eating grains all my life didn't help.
I could write a book, but we are all different and what helped me may not help anyone else - each of us needs to listen to our own bodies that want to heal themselves. It is not just about food, but when to eat and drink, when to exercise, when to relax and relaxation techniques, gratitude, trust in our bodies and the universal energies to help us and so much more. Life is certainly a learning experience and a different one for each and everyone of us.
Gosh! "pieces of dressing stuck in side me for 6 weeks". Not good
Would love to know more about what you did to keep off the drugs as I am only a beginner on this path. Hoping you will share what you can even if its not "proven" or lab tested. Willing to try at my own risk.
One of the GP's that I saw who stated we had come to the end of the road where the conventional system could help me - one of the few real healers among doctors that I mentioned, suggested a spiritual healer because, of course, my spirit was low and the spirit is what keeps us alive.
I know this from experience. The spirit is what leaves the body when we die. No one knows fully how it leaves the body, but when I was ill my fontanel opened up and when I asked a knowledgeable healer why that was, she said it is getting ready for your spirit to leave the body.
The stories of those who have died and viewed the doctors trying to resuscitate them from the hospital room ceiling are telling the truth - I know because I had near death experiences. I was so ill and it was all so unnecessary, or was it? May be it was my pathway in this life and part of my spiritual journey of existence.
I had an extraordinary experience during the second session with the healer which made me curious. I went on to have healing from others and eventually trained to give healing to others, or channel the universal energies as I prefer to explain it, working in a drop-in voluntarily weekly. I had many extraordinary experiences both when receiving channelling and when giving it to others.
Those who have been seriously ill and who have experienced a natural healer's channelling will understand, I am sure. Many never talk about it. Others have written books and I have read many of them which also contributed to my healing because it helped me to realise I was not alone in my experiences.
Each healing session led to knowledge for me where I knew what I needed to do to help myself next.
I was treated by nutritionists and several different sorts of therapists/healers including a kinesiologist who taught me how to muscle test myself for everything I ingested - a brilliant way of getting in touch with the body's autoimmune system and subconscious. She lived a hundred miles from me and needed to teach me rather than test me herself, she said, because the body changes all the time.
I had to be careful what I ingested when I was so ill and the kinesiologist who was also a nutritionist put me on a liquid nutrient which I drank 10 times a day - it was pure and natural no additives or chemicals and it kept me alive.
She was also a Reiki healer and whilst giving me healing one day, she asked me to look inside my body and tell me what I could see.
I thought I couldn't do it, but she said I must, as she was trying to keep me alive.
I started at my oesophagus and worked my way down to my stomach and intestines and I could see a black mass in my colon on the left side. I had a huge lump there and my GP suspected bowel cancer.
The therapist had a CDSA carried out and the results showed bowel cancer or a precursor to it, but I refused the conventional colonoscopy; the gastroenterologist felt the picolax alone could kill me, so he was pleased I refused it.
When I told the therapist about the black mass, she asked what else could I see - I said isn't that enough - she said look again and I did, I saw something like frogspawn was how I described it.
She ran out of the room and went to her store and came back and flopped something on to my navel and muscle tested me. She said it was slippery elm - you mix it with water and drink it 3 times a day - it is like a jelly.
She said your body knows exactly what it needs to get you well. I had to heal my gut from the terrible drugs I had been given.
She later went on to test other foods including almond milk because I could take no dairy. She once saved a baby's life with almond milk much to the surprise of the doctors. The baby had a liver problem and, of course, so did I with all the drugs.
I met amazing people that I will never forget.
Each person I saw was recommended by the previous when they felt their work was done. They were all recommended and highly trained and experienced. It was an incredible time when weighing only 5 stone 10 lb, it seemed as if it was only my spirit pushing my skeleton around.
There is much more, but I would write the book now if I continue.
I have written it all down in journals and one day I hope to do a book for my family because even they do not know all that happened for me.
One therapist told me I would need to be careful for the rest of my life and I know she was correct.
Toxicity and trauma can cause blockages that turn to physical symptoms.
I have to manage the damage basically of a life-time of physical trauma from various sources including a toxic, invasive and traumatic health service that I never questioned or may be didn't have the confidence to question until I received true healing.
Perhaps you can now understand more about how we are all different and what one needs another may not.
Wow! There are so many new things in your post had to google several times! All I have is 6th sense. You must be very spiritual to have been gifted the art of healing. Where abouts are you based?
Always best to go with someone recommended, rubina786, Ask around especially in health centres/shops and even spiritual centres/churches. You will know when you find the right one for you. Everyone I saw was recommended as I said. I know I would be dead now if it wasn't for those brilliant people. All the best.
This imo is the crux of the matter. With all the warnings we are issued with people are still willing to attempt to aid themselves at their own risk. Now what exactly does that say about how patients perceive the treatments they receive.
We are lucky in that in the UK NHS treatment is free. But in many countries it must be paid for out of insurance or out of pocket. It can and does lead many families across the world to bankruptcy. Even in the UK reduced incomes due to poor health take their toll.
But our medical model that relies on pharma is the western model. Adopted across many countries with some tweaks here and there. Nothing else must be allowed to challenge it.
They start early with the teaching received in medical schools. Teach the students about drugs and how to write prescriptions to hide symptoms of conditions patients may present with. A pill for every ill. And each time one is prescribed, kerching for pharma. And don't include too much time in the syllabus to teach students about irrelevancies such as nutrition. Cos that is of no use for doctors attempting to assist ill patients.
Pharma doesn't want competition. Control what the doctors can do by threat of striking them from the medical register if they don't tow the line.
"But alternatives have not been through testing procedures" is the cry often heard.
Well actually many alternatives have been tested throughout history. But if people don't read and research for themselves they would never know this.
That's why I tell people to research for themselves. But many prefer to just trust the word of 'experts.
That's fine. But don't take away the right for those who are prepared to do the leg work for themselves.
I feel that your comments are unfairly maligning the vast majority of healthcare providers within the NHS who want to help people manage their illness and feel better. Pharmaceuticals are often used in lupus because their is a wealth of clinical evidence showing that they are generally safe and effective. They do cause undesirable side-effects in some cases, but good consultants will weigh up these potential risks against the potential benefits of such a course of treatment. It must be considered that over 50 years ago before the use of steroids and immunosuppressants in lupus the survival rates were much much lower.
I don't believe that any doctor would claim that pharmaceuticals will cure someone's lupus - there is currently no cure. They do help a lot of people in the management of their lupus, but lifestyle changes such as pacing, healthy eating and regular physical activity are also very important. We know that a lot of people with lupus use complementary therapies, often because standard treatment is not sufficiently controlling symptoms, or is causing undesired side-effects. Again, most doctors will be happy for their patients to try these therapies, but they can also help warn them about potential adverse effects, interactions with other treatments, or snake-oil salesmen.
Increasingly medical professionals are looking at more holistic care for conditions such as lupus and discussing possible therapies that may help, including counselling, acupuncture, massage and physiotherapy.
I think it is dangerous to suggest that people should not use standard treatment and make accusations that it is designed to stop them from getting healthy and keep them under the thumb. This may be the route that some people take, and if they are able to manage their symptoms effectively then that is wonderful, but it will not be a safe option for everyone.
Sorry not to respond sooner. I believed that this thread had become dormant some days back and stopped watching for replies.
Okay, you suggest I am unfairly maligning NHS staff when I have already mentioned in this thread of having many NHS staff assist me over time and have shown and expressed great gratitude for it.
No, the point I was making is that the direction that NHS healthcare/western healthcare takes is doomed to just be a sticking plaster approach. Imo, reached over time, I no longer believe it will lead to a cure.
As a human species we would have long since expired if we were awaiting some new drug treatment or gene therapy.
The fact that we survived for millions of years suggests the basic model is quite resillient. But for some reason modern life is causing a large and growing number of failures.
Those modern failures seem to be concentrated in the last 50 years.
We had had great improvements in healthcare as our knowledge grew regarding hygiene and nutrition. But now we face new problems.
I currently believe that what we are putting into our bodies, or not putting into our bodies is causing many of these failures. This is being done unwittingly on the whole as we assume that with all the modern controls in place that any food we buy has got to be good for us. Or at least not bad.
I spent much of my early years with a Victorian grandmother, who cooked whole ingredients from scratch. We ate many foods that are now considered bad but cooked from real and not manufactured ingredients.
Of course, time moved on and morphed into a more convenient and time poor society. Within such a society it's all too easy to eat on the run. Grab snacks as the opportunity arises, and generally but not intentionally, cause the body to become drained of its nutritional energy sources.
Initially nobody believes or even thinks that could be possible. We live in a developed country after all. We don't suffer famines or malnutrition.
Well maybe we are becoming malnourished. And with malnourishment our bodies are screaming out that there is a problem.
If we then do what we can to mask the symptom but don't address the cause the issue will over time get greater.
Of course our bodies can be weakened by injury or bacteria or viruses. But with a strong immune system we are better able to fight back. A weaker immune system will make that more difficult. I decided to test my theory by ensuring that I followed a more nutrient rich diet of real not manufactured foods.
I think it has helped. The burning question is. Just how far can it go towards a cure?
People are constantly told there are no cures. That is the mainstream view. But I do not believe that all who suggest that cures are in fact possible are snake oil sellers.
If what you are doing isn't working then more of the same is not going to suddenly throw up a different result.
So something different needs trying, at the very least, in combination with the sticking plasters.
It potentially has huge ramifications to suggest that much of what is available to us as food (nutrients) is anything but. But I believe that that is one of the main pillars to be tackled.
And just so you CAN be justified in me criticising the NHS, I will say that hospital food is severely lacking in its ability to aid recovery for seriously ill patients. It's unlikely to change with budgetary restrictions but that is just another example of how the healing approach to the NHS is hindered.
I agree with you overnighthearingloss . It's not the doctors we are criticising Paul but the system. I posted an article above regarding the pharmaceutical data not being reliable and the reasons why...
I've discovered I've had several nutritional deficiencies and a build up of toxic metals. I'm sure this has caused me to be autoimmune and have allergies etc. If that is taken care of I doubt I'll need any pharma drugs. A functional Dr is helping me
They look for the route cause so that they dont have to mask the problem. The people that have no faith in functional medicine should look at the individual studies on vitamins , minerals, detox and diet on pubmed. To be honest though, I prefer patient reviews after what Richard Horton (the editor of the lancet medical journal) said about most of the studies not being accurate. I have some friends being helped with this kind of programme so ill stick with it. I'm getting slow improvements.
Something I heard from a natural health site suggested that many of the doctors may themselves be suffering from burn out, which may also be from inadequate nutrition levels.
You need more when in highly stressed environments.
An ongoing lack of various nutrients may allow genes to up or down regulate accordingly giving conditions the chance to take hold.
Epigenetics.
If this concept is real, it's not enough to say my genes predisposed me to a condition and therefore nothing can be done
I know what you mean. I agree emotional or physical stress could cause the nutritional deficiencies. I read stress can lower stomach acid and affect the absorption of nutrients. I have had so many deficiencies since glandular fever. I'm pretty sure that these deficiencies not only slowed my thyroid but also affected my ability to detox. I have 7 heavy metals out of range in a recent private test and I can't tell you how ill I've been. As Paul said they know from research that chemicals and toxins are linked to disease but the NHS never test for this. Nor do they suggest gentle detox regimes (you do have to be careful with this). Functional Drs specialise in this.
Paul also mentioned hormones are in the studies and linked to ill health. An endocrinologist agreed with me that diet and lifestyle helps to balances hormones. My hormonal issues have resolved through this yet doctors offered me the pill as a solution. No mention of diet and lifestyle. Eek.
In my experience they dont tackle root causes and do try and mask with drugs. It's not the Drs fault, that's how they have been trained. You don't ever hear the pharmaceuticals telling us how to heal our bodies naturally as you can't patent natural products like vitamins and minerals etc. No money in that. Hence, less studies etc.
I had glandular fever many years back. Very bad at the time. My spleen was very inflamed and swollen. I hadn't realised that there may be a return match years later.
For many years before lupus diagnosis I used to eat like a horse but never seemed to feel energised by food.i remember remarking at the time that I didn't feel I was getting any energy from my food.
Whether it was poor food choices or digestion problems just rearing their head, who can tell.
I just carried on and ignored it at the time. Until the big whammy finally hit.
That's such a shame. I had the inflamed spleen too.
I know what you mean. I wish I knew what I know now over 20 yrs ago. I took ill as a small child. I don't think I'd be ill at all if I had done functional medicine from the beginning. I actually only heard of it 7 years ago. I wasn't sure about it at first but once I well researched it, it made sense and I started 4 yrs ago. Correcting deficiencies stopped me sleeping all the time, helped brain fog, dizzyness etc but I still have a long way to go. Hopefully, if I start detoxing the heavy metals I'll eventually have more of a life.
I can hear you. The only way to stop this illness without causing further damage is to turn the inflammatory process/inflammatory DNA genes turned off. So far, there's no method to do that. I can see the logic in too much investment in developing drugs. I'm sure eventually, there will be a method to turn the DNA genes off, but when? I doubt it would be in my lifetime. Cynical? Maybe.
There are other governments which proactively considers SLE as a very difficult to manage, chronic condition and SLE patients get extra funding/social welfare support towards ongoing medical care/living support on top of what they pay out and get. Generally, SLE is a poorer cousin of RA in the UK. If you got RA, you seem to get better treated, but then again, I would not say it's someone's fault. Different countries, active campaigning by specialists, awareness as to the seriousness of the condition and financial/social impact and many other factors at play.
It's also a very unpredictable condition which is relentless and affects many aspects of normal life and destroys someone's life quite easily. Longer the illness goes, harder, it will get, and I can really understand the sentiments. I cannot say, SLE care is superb on NHS. It might have been in the past, but the past has gone. Perhaps, funding cuts and NHS policy etc. Many people who can afford to use private care are ok (if not ideal), but otherwise, it can get quite dire (and you can die from unmanaged SLE if you are unlucky) if you are poor and have no access to NHS care. Postcode lottery, we often discuss on. I don't know Lupus UK that much so I can't comment. Having this hub certainly gives us a lot of insights from other patients.
Read up on epigenetics. A new area of study. We cannot change the genes we were born with, but it's suggested that certain foodstuffs, vitamins and minerals can up or down regulate certain genes and in the process turn certain disease processes on or off.
I am more hopeful of this area of study, than most of that on offer from pharma.
Please don't say that! Giving up is not an option. Will yourself back to health, laugh even when in pain...never be sad or feel hopeless it will just get worse....the body and mind are designed to regenerate by thoughts, words, feelings, emotions, deeds... multiple treatements out there simply assist (or hinder the process). Struggle to find the right triggers for you. "Happy People" against all odds make it happen.
Checked out epigenetics briefly. There is so much inside oneself that "knows" (somehow) anything is possible, science has not even scratched the surface yet.
One more pearl of discovery for mankind and hopefully wisdom to look forward too thanks x
Gosh thats tough! They must have collected a wealth of dos and donts between them. Hope they are managing to keep it in control and able to help you too.
I find its like growing old suddenly. One benefit, you soon find out who your real friends are!
Yes you would think that knowing relatives that in a couple of cases have had an autoimmune disease for 10 or 20 years would help. But they are a dopey lot I am afraid to say! My Rheumatologist + this site have helped get me back on the road to seeing the glass half full again.
I would like to challenge your statement that there are "no studies done to find root causes." There is no basis for this claim and in fact the opposite is true. There are many studies that have already been completed and are currently underway to understand the mechanisms behind lupus. It is an immensely complicated illness that appears to affect many different components of the immune system and could even be a spectrum of various illnesses. We still have a long way to go before we understand it, but treatments are being developed to target some of the parts of the immune system that seem to 'go wrong' in lupus and hopefully these will help to improve outcomes for patients.
I replied but sadly my browser hung and lost it all...here goes again..
Actually I did not claim or state that, it was a question to begin with "...no studies done?" and then I assumed there couldn't have been on the grounds that if the medical profession was still treating "symptoms" obviously root cause analysis may have been done but no definitive answer or conclusion might have been found else they would be treating the desease not the various symptoms.
I was not interested in studies to understand the mechanisms behind lupus but more about studies on what triggers it, common factors, conditions that have to exist to cause it and all possible reasons. This I agree could be miles long! But hopefully narrowed down to x percentage of definitives.
I find it strange that we treat symptoms...no point in suppressing pain (crude example) its there for a reason...our body is telling us something is wrong. The cause should be addressed.
If you can't breath, no point in supplying oxygen tanks when theres something stuck in the airways that needs removing.
If you have a constant head ache, giving pain killers and not looking at the reason (tumour, fumes, bad pillow!) is not really "treating" it, its just suppressing and making the problem worse by a concoctions of pills whose side effects can never be managed as they were never tested together...the cycle of pill peddling simply continues.
I did not come across any papers published to feel satisfied that research was being done, common factors in patients, common drugs that might have been given ...hence my question.
Its not uncommon to find out decades later that xyz caused whatever desease, not every drug is safe and long term effects unknown so was curious.
I do realise its a very complex condition so no simple answers but seems to be getting very common now so hoping to find new research and more studies being done. Like there is a British Heart Foundation...is there a Lupus Foundation that gets funding for research? ....just feeling for myself and everyone a kind of desperation and helplessness. Our NHS is amazing and despite mistakes by a few individuals resulting in my heart attack I totally appreciate what we have and how difficult the task is for GPs and specialists. Not knocking it at all. Come from a problem solving background so am used to seeing research into causes ..... and then prevention and cures. Can't get my head round not knowing the cause and treating. Just does not make sense to me.
Very naive of me I am sure. Medicine is probably full of such issues as we cannot know and understand everything that goes wrong. Will check medical journals to satisfy myself I guess. One day a nationwide study or even survey of all Lupus patients will be conducted and someone will have an answer! (1000 question limit with 1 year to submit)
I disputed your claim because there is no question mark in your original post - please feel free to check at the top of the page.
There have been a large number of studies which have examined the 'triggers' of lupus and various causes have been identified including hormonal changes during puberty, pregnancy or menopause, certain viruses, exposure to sunlight, exposure to certain chemicals and prolonged courses of certain treatments. Research over the past 10 years has also helped us identify many more genes involved in the disease, from around 10 in 2007 to over 70 in 2017. As I said before, lupus is a very complex condition presenting differently across patients - there isn't a one-off common trigger experienced by everyone.
Lupus treatments help to reduce inflammation caused by the condition and calm the immune system to prevent further inflammation and damage from occurring. I would argue that it is incredibly important to treat symptoms, even if we do not yet fully understand the causes and mechanisms of the disease, because it helps to alleviate symptoms, reduce damage accumulation, improve quality of life and reduce fatalities. Ideally we would like to know exactly what is causing the illness and use a 'magic bullet' to cure it but there is still a lot of research needed.
This forum is run by LUPUS UK (I am the deputy CEO) and we are the national charity for people affected by lupus. We fund a lot of research in the UK, as do Arthritis Research UK. There are also lupus organisations in other countries who fund research.
"We treat symptoms and not any root cause. Because its not possible? I find it strange that no studies were done to find root causes."
You can always request an account as to how much Lupus UK is "earning" (usually, through memberships/fund-raising etc) as a charity and how the money is spent. You can see how much money is spent on which "studies" and who's conducting these studies, what they are actually doing and if there are any new treatments being developed, anything useful in the pipeline or not. This type of information is available by contacting the Charity Commissions, which hold the accounts of all UK based Charities.
I must admit that given the seriousness of this condition and financial hardship, involved, I can imagine people cannot afford to be complacent and want to know there's more than "support network and detailed info about Lupus". I have to agree that many people wouldn't be able to consider painkillers and slump into a chair as a viable, long-term option when they have to be making ends meet. It's a very similar approach when psychiatric hospitals gave their patients pills to keep them sedated, quiet and go away when they probably had the real root causes, which remained untreated.
To be fair, this may not be something Lupus UK would be solely responsible. In other countries, eminent SLE specialists work with the respective countries to ensure the correct standard of medical care and social welfare, along with the charities as far as I am aware.
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Wonder if civilization who do not have modern technologies (phones, laptops, microwaves, wifi) gm foods, vaccines, processed foods etc etc all the rest of possible suspects...are healthier ( "The good life" type of people who live as "naturally" as possible) ....What percentage of their population contract such ailments would be interesting to know.
Love their life style. Simple and close to nature and probably very healthy! Sadly never met an Amish.
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