RA: Just watched the link in regards to autoimmune... - NRAS

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Therapy6650 profile image
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Just watched the link in regards to autoimmune deficiencies- it makes sense to me. Why are some of the medical professionals so stuck in the dark ages. I'd always prefer honesty even if they just admit they have no idea how best to treat me rather than go through so many procedures just because that's what they've been taught to do. Sometimes we have to drop the clinical approach and become more humanistic.

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Therapy6650
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Simba1992 profile image
Simba1992

I think the situation would be quite different if the Pharma wouldn't be allowed to decide where their money for research would go. More and more research on symptom oriented meds has proven to make people sicker rather than healthier. The number one killer in the US are the prescribed meds.

helixhelix profile image
helixhelix in reply to Simba1992

?? Prescribed meds? Really? All the sources I look at have heart disease and cancer as the leading causes of death. Both of course hugely influenced by lifestyle including diet, smoking and exercise. And if you go back 100 years or so then leading causes of death then were things like infections that prescribed meds have made a thing of the past.

The main pharma companies are businesses, so their research is guided by business principles, shareholder requirements etc. If you want a different (and yes perhaps better) research system then we'll all have to pay more taxes to fund it, donate more voluntarily or change the whole basis of western world economies.

Can't have your cake and eat it.

Aureliabert profile image
Aureliabert in reply to helixhelix

Sorry but big pharma has a huge interest in selling exspensive drugs , afcorse we live longer because of the medicine on the market , but is still because the BIG pharma put them on the market and sell them to us , is a viscius circle, if I need to pay more taxes for research is OK whit me , where we start????

helixhelix profile image
helixhelix in reply to Aureliabert

I'm not denying that pharma companies have an interesting selling expensive drugs. I'm merely stating that that's their business. No different from a fishmonger who want to sell you the fish with the biggest profit margin, whether or not it contains heavy metals. That's what business is. It's about making money.

nomoreheels profile image
nomoreheels in reply to Simba1992

Where did you find that stat Simba1992 , can you copy us a link please? According to the Centers for Disease Control and Prevention, National Center for Health Statistics, the leading causes of death in the US are as follows:

"Number of deaths for leading causes of death

. Heart disease: 614,348

• Cancer: 591,699

• Chronic lower respiratory diseases: 147,101

• Accidents (unintentional injuries): 136,053

• Stroke (cerebrovascular diseases): 133,103

• Alzheimer's disease: 93,541

• Diabetes: 76,488

• Influenza and pneumonia: 55,227

• Nephritis, nephrotic syndrome, and nephrosis: 48,146

• Intentional self-harm (suicide): 42,773"

cdc.gov/nchs/fastats/leadin...

Coastwalker profile image
Coastwalker in reply to Simba1992

I wouldn't touch prescribed medications and vaccines with a barge pole now, unless forced to, I use to trust in these meds and vaccines, but not anymore now the truth is starting to come out about them all and what is really behind many of our illnesses.

Kelone profile image
Kelone in reply to Coastwalker

I have been treated for Arthritis for over 15 years . now all my problems are Damaged from so call treatment for Arthritis . My Rumatologist blaming everything on Arthritis and not looking further increase meds all the time .I'm so toxic now from all the poison . Turned out my spine misalignment was causing all my flair ups . 6 week program twice a week with a.Modern day Chiro . Now I'm off Melthotrexate , taking , high dose Magnesium and Vitamin C powder Alfalfa tea 3times a day . I feel 20 year's younger .I don't trust big pharmaceutical or Doctor's at all . Not even taking Arava any more. So glad i got a second opinion . I'm not saying the meds don't work, i wouldn't have been able to move at all without the meds, in my early treatment when i first had Arthritis . Just keep an eye out on long term use of the meds .keep on moving or loose it .Good luck and God bless, every one with your battle . Regards

Kel

Coastwalker profile image
Coastwalker in reply to Kelone

So pleased you have come through it all Kelone, do also look into taking vitamin D3+K2 together. Also look into taking vitamin B12 too as spine problems from head to toe can be caused by low or deficient vitamin B12.

Many years ago people were treated with plant based medicine which worked, (God gave us our Earth, food, water and natural medicine too) not many plants were deadly, now we get treated with the so called 'Rockefella Medicine,' (do google that :) ) apparently all the naturalists were forced to close down to make way for the Big Boys.

Kelone profile image
Kelone in reply to Coastwalker

Hi thanks for sharing information Coastwalker .Yes i agree with you . and the B12 I'm on it 😎 The D3 + k2 together will have a look at .The crazy thing i find with all the research.Was great to find a Chiropractic therapist using different techniques, and working on nervous system Getting the whole body to function properly. Qualified Natural health Therapist. One that has a proven track record that is specific to that disease . I have been to heaps, spent a lot of $ on a lot of crap that doesn't work 4 me lol, but may well work for others .I also agree with you we have been given everything on Earth from our Creator to heal us. The Rockefeller. I totally agree (Rick Simpson woke me up to this many years ago. (Hemp oil has already saved heaps of people with Cancer. People need to stop watching the news as much, and do some popper research . Watch some Documentaries. I eat and grow my own organic food . Not game enough to grow my own Medical Canabis, not legal in Australia yet lol .Also avoid anything processed especially containing Nitrates .No sugar . Apart from Fructose from fruit . and honey which has both Glucose &fructose . Only have small amount. After being Treated and letting Doctor's 'Rumatologist have there way with me ,not listening to a thing you tell them . what is happening .I was getting no ware . All those people that say it worked good for them good luck and Glad it worked . Worked for me too at first, was fine for 10 years Then the Stomach problems from long term prescription Nonsteroidial Anti-inflammatory . saying no more about that one that another book 😊 wow that was a big vent 💨 I'm saying bye for now . Take Care everyone .

Regards Kel

Coastwalker profile image
Coastwalker in reply to Kelone

Wow! brilliant to hear Kelone, get it all out. :) :)

The truth is all networking out fast, but still many need to wake up and realize the humongous lies we have been told. Yes TV and newspapers are controlled and only tell us what 'they' want us to know (to keep us all under control)

How many know that 97% of cancer is curable without dangerous chemo ?

Vaccines ??? (won't go into those)

'We are what we eat' use to be the saying, but now people are saying 'we are what our bodies consume.'

A neighbor recently has almost cured a big tumor with hemp oil, reducing it to pea sized and another I know has used colloidal silver and sulphur water to shrink a big tumor. Do we get told about these or how good vitamins and minerals are ???

Yes, natural/organic and back to nature is the best way to go Kelone. :)

Simba1992 profile image
Simba1992 in reply to Simba1992

To be more precise. These are the news CNN and BBC came out with May this year:

"Gupta: Let's end the prescription drug epidemic"

" A person dies every 19 min on avarage from accidental drug overdose."

" The bigest man made epidemic in the US"

" 125,000 drug deaths a year and rising".

The TV commercials, that come every 5min in the US are domminated by Pharma. Happy people are popping meds for every possible ailment in these rosy commercials.

It is not at all unusual that senior citisens have more than 10 pills in their daily arsenal and it has been shown that the older you get the more help you need from specialists but what has become a problem is that every specialist prescribes his own meds for a specific symptom and there is no one who takes responsibility for the whole picture which has led to an over consumption of meds with a growing number of side effects that in turn are treated with new meds and so on.

How ethical Big Pharma is in doing business is really a chapter in it self.

Amy_Lee profile image
Amy_Lee in reply to Simba1992

Simba, I do not trust med or supplement in my life before RA, I hardly buy any supplement over the counter and hardly got sick to take med. However, when I was suddenly very very sick and diagnosed of RA, I had no choice because of the inflammation and the great pain that kill me.

I went to not only the rheumatologist but also the traditional Chinese treatment. However, my son told me "NO, mummy, just listen to the rheumy because they had all the research to back up what they prescribed for you". My son is still in his 4th years of medical course in Taiwan, he wanted me to trust him just because he is my son and he will give me the best advice he could. I was lucky that the traditional Chinese doctor did also say that I should stick to only one kind of treatment to avoid messing up, so I stopped going to see him.

What I am trying to highlight is we cannot deny the fact that prescribed med is very important to us when we are being diagnosed of chronic disease like RA, though we know diets and food can help us to minimize a lot of sickness.

I trust my son who will not harm me!! I believe, without mtx, I will not get back to my normal life today. With only diets, I believe many of my joints would have been damaged before long. I am not knowledgeable enough to only depend on diets to cure me, I am not brave enough to do that and I trust my rheumy!

Simba1992 profile image
Simba1992 in reply to Amy_Lee

Hello Amy_Lee,

You are so right, meds have their place. This does not mean that diets wouldn't also have theirs and often may even help the meds to work. But still the fact remains that in the world of today too many meds are being used and are causing health problems.

Amy_Lee profile image
Amy_Lee in reply to Amy_Lee

Simba, we are the consumers, we must be wise not to be dragged in by the advertisement around us. I do notice many friends around me take a lot of vitamins on their own daily. I ask them why they need that? They said that vitamins are for the good health hence they take them.

I never do that because I believe we can get enough from the food that we eat. I started to take medicines and vitamins only after I was diagnosed of RA and all these medicines are prescribed by my rheumy. Beside these, nothing else I add on except for chia seeds and black sesame seeds at this moment.

Simba1992 profile image
Simba1992 in reply to Amy_Lee

With supplements and meds they should always be taken for a reason that has scientific evidence. Doctors like all professionals have a spectrum of knowledge of what effects are health and what research tells us, they are not experts on everything. Research tell us that when we suffer from RA the chronic inflammation depleats our bodies on certain vitamines and minerals, because our bodies need an excessive amount of them for the over active immune systeme. We also know that on a cellular level, the mitochondria that supply us with energy, are dysfunctional. We know that the production of cortisol is lowered because of the constant stress on our adrenal glands because of the overactive immune reaction. We also know that oxidative stress is part of the RA picture.

When we take supplements, diets and do excersize that are targeted to correct these malfunctions we are supporting our healthy immune system and the healing process, we are not interfearing with any medical treatment one may be on, on the contrary often help the meds to work better. The reason why so many rheumies dicourage us to use supplements is because they do not have enough knowledge. But we as patients have a possibility to educate ourselves on these issues without fearing that we are somehow jepordizing the medical treatment given to us.

Kelone profile image
Kelone in reply to Simba1992

So true Simba1992 and totally agree. If you have had RA or any disease. you are the person living in the body with the disease ,and there is no one size fits all. Never give up. Take care everyone ☺

Amy_Lee profile image
Amy_Lee in reply to Simba1992

Simba,

I too do not have enough knowledge to just take any supplement. Since I am doing good now, so I like to continue the same way. As for diets, I do think it will help to maintain my remission stage so I will have no issue to read up more and follow the diets accordingly.

Anyhow, as you said, no one thing fit all, I do agree on that. You know your body well so you should know what best for you.

Simba1992 profile image
Simba1992 in reply to Amy_Lee

Amy-Lee,

I think you are in a good place at present😊 You do not have elevated inflammation markers and you have never had RF or CCP antibodies and your symptoms are gone, so as you say you have no need for supplements and getting what you need from what you eat. Good luck and take care😊

Amy_Lee profile image
Amy_Lee in reply to Amy_Lee

Simba,

Though the markers are all normal and I am very much back to my normal life now, but I can still feel my joints a bit different from before hence my next goal is to try to get back to where I was, that would be feeling totally normal. I believe this can be achieved if I continue to eat what I eat and do what I do.

I sincerely hope all the RA patients can achieve remission soonest to avoid the pain. It was so hard really to live our life in great pain.

You've been misinformed Simba. People, like me, that live in North America have never heard of that before.

Janeellen profile image
Janeellen

I'm not from the USA, but interestly enough I read an article just yesterday about this. It states;

" The researchers found that America’s leading cause of death isn’t heart disease or cancer: its conventional medicine. They found that the iatrogenic death rate in the US (death caused by doctors and/or medical treatments) is 783,936 a year. That’s 84,059 more deaths than those caused by heart disease in 2001 and 230,865 more deaths than those caused by cancer."

draxe.com/conventional-medi...

helixhelix profile image
helixhelix in reply to Janeellen

I think you should analyse that article carefully, it contains a lot of bad science.

Janeellen profile image
Janeellen in reply to Janeellen

helixhelix I wasn't saying, or implying, I agreed with the statement, I was merely responding to the request of nomoreheels who asked for a link.

I've noticed, whenever I comment, you try to argue any point I make, even if my my comment is personal to me. I guess you're just one of those people with an argumentative, superior attitude.

helixhelix profile image
helixhelix in reply to Janeellen

And I wasn't arguing anything, or being superior, but merely suggesting that you question things. Which is something that applies to all approaches, whether conventional or otherwise. I believe a lot of the alternative and functional approaches are potentially excellent, but it doesn't further the cause of a more holistic approach to health if we accept poor science, exaggerated claims or trumped up evidence.

Janeellen profile image
Janeellen in reply to helixhelix

I didn't say, or imply I was questioning anything, as I said I was responding to the comment made by nomoreheels, not to anything you'd said

in reply to Janeellen

We need to question things. The NHS are not infallible.

Janeellen profile image
Janeellen in reply to

Hidden ..the conversation wasn't about the NHS at all.

in reply to Janeellen

Sorry yes kind of knew that and was aware that I had not fully read the thread. I just feel that we do not question gps and specialists enough and that they are less than transparent about side effects of drugs . Feel kind of bad now though as your comment is so abrupt.

Janeellen profile image
Janeellen in reply to

I didn't mean my comment to come off as abrupt. I actually thought, by your comment, you'd misunderstood the whole thread topic, and was merely pointing out, the topic wasn't anything to do with the NHS.

in reply to Janeellen

Oh, ok. No worries. I guess my comment probably did come across as a bit random.

nomoreheels profile image
nomoreheels in reply to Janeellen

Ah, I didn't realise this was the link I'd requested, thanks for that Jane.

Well, I'm sorry but I think I'd rely more on information supplied by The USDHSS, a Government department, rather than a Dr (Chiropractor, Certified Nutritional Specialist) in such circumstances. When compared with other sites I agree it is poorly written, even alarmist. He doesn't quote from reliable audited Government sources, the basis of the content is from an association who funded the review, The Nutrition Institute of America, a Private Company (he omitted to add the "Inc"). As with all controversial reports there's another side to the story so please do read the following link, as the headline says it gives context to Dr Axes publication nytimes.com/2016/08/16/upsh...

For reference for anyone researching nutritionists in the US generally this link may come in handy articles.chicagotribune.com.... Similarly this is guidance/necessary qualifications for the UK nutritionist-resource.org.u...

Janeellen profile image
Janeellen in reply to nomoreheels

nomoreheels - I agree. All I was doing was quoting from an article Simba, may have, had their information from.

nomoreheels profile image
nomoreheels in reply to Janeellen

I understand Jane, no need for clarification. Really the rest of my reply should have followed on from Simba1992 's but you as provided the link I continued responding. It appears we're in agreement anyhow.

Amy_Lee profile image
Amy_Lee in reply to nomoreheels

I agree with you nomoreheels . We need to be very careful on what we read online. Like what helixhelix said, I do think that she was trying to ensure we are not being misled by all these links only. Anyhow, I always look at thing positively hence I am okay with all the discussions here because I think we are not trying to argue but trying to make fact to eliminate any party to mislead us, the poor RA patients who go all out to look for fast recovery.

in reply to Amy_Lee

Yes and sadly there are people who make money off the backs of people that are suffering and looking for the "miracle cure"

Dr. Josh Axe is a DC (Doctor of Chiropractic) he is not a Medical doctor. Josh Axe is a nutrition guru in the US. It seems Mr Josh Axe is making money stating this.

If 783,936 people per year are dying in the USA because of doctors, every newspaper, news program like CNN would be reporting this.It would be considered an epidemic.

The Office of Technology Assessment was closed in 1995 not because of the reason Josh Axe claims.

en.wikipedia.org/wiki/Offic...

nomoreheels profile image
nomoreheels in reply to

Just to support Sue's (Hidden 's) reply, everyone please do note that the 'Dr's' who are mentioned in regards to dietary programmes may not necessarily be Medical Doctors. Both here in the UK & in the US (other countries too) the use of 'Dr' is a courtesy title, for example, Chiropractors (qualification DC, MChiro, Doctor of Chiropractic etc) & others. Unless the letters following their name includes a recognised medical qualification (MB, BCh, MRCGP, MBBS etc) they do not hold a general medical qualification. Here Chiropractors generally do not call themselves Doctor so it's not so much of an issue but many of the links are from the US where it appears it's more commonly used. The easiest way if unsure of the Dr title is just check what the letters after any mentioned Dr's name actually relates to, which qualifications they have.

If interested there's further reading here gcc-uk.org/registration/inf...

Thanks.

AgedCrone profile image
AgedCrone in reply to nomoreheels

I had to smile the other day when watching one of those "The housewives of'xxxxxxx" series....sad I know but I was very bored.,

A couple were having marriage counselling from a real Spiffy looking guy.....at the bottom of the screen it said Doctor Bloggs , Doctor of Osteopathy!!

I wonder if he was going to tell the poor couple their problems were all in their bones.,

nomoreheels profile image
nomoreheels in reply to AgedCrone

Do you know it's beyond daft, not even pretending. I know the type of programmes you mean, I've not seen the American ones but I imagine they're along the lines of the Cheshire one. I've watched a few of that one, we have some acquaintances who live in a big house that area & can just see how it is.

baconbeast profile image
baconbeast in reply to

No they would not! Big Pharm owns them all.

Many Medications do definitely save lives (that has to be said loud and clear). However, there does seem to be a weird collective dissonance amongst the medical profession, when it comes to admitting/accepting the sometimes life threatening side effects of drugs.

I have come up against this time and again. I have always had the greatest respect for the medical profession (it's a hard job!). It is difficult to hang on to that respect when one is lied to.

I have no idea what the stats are as far as deaths from medication is concerned. I do know the stats are pretty high when it comes to adverse reactions ( including death) in psychiatric patients.

in reply to

Sorry, missed out cognitive!

sylvi profile image
sylvi

Now before i start this post i just what to add something before my rant. Cancer is a horrible disease and i won't be taking nothing away from that,but now here we go. Yes cancer is hard and the rant is that they plough so much money into research for cancer and all the begging adverts for funds on the tv and the bin bags they push through your door,but to my mind you either get better or you die,that may sounds hard,but it is more or less the truth. But with RA you never get better, you just get worse and you don't die from RA well mostly anyway,its the other things that come with RA that does that. Ra rarely if ever comes to the party on its own it always brings it friends with it as well,eg; fibro,cfs you get the picture. There are no adverts on tv for funds,no bags pushed through the door,i know NRAS do fundraising and they do a brilliant job. Now here comes the bit where i might get some different opinions to my answer to this post. We are always at the hospital/drs for appts. going into old age and we need more expensive drugs to give us a bit of quality in in our life with some getting no benefit and the gps are only able to manage our conditions and can't add new drugs without the hospital say so. My rheumy is stopping coming to my hospital because he has so many patients at his hospital which is just up the road from us( i could transfer over there,but the car parking is dreadful so i have elected to stay where i am) My rheumy nurse is as well overwhelmed with patients. I could go on,but i had better stop and thank you for letting me rant.xxxx

Martinilady profile image
Martinilady in reply to sylvi

I agree whole-heartedly there are do many people suffer with diff types of RA in so many countried & its bloody painful I just wish there was more money & research went into it.

AgedCrone profile image
AgedCrone in reply to sylvi

I agree Sylvi...I've had cancer twice & .....some will say I'm pushing my luck here......I'd rather go through cancer again than have RA.

I've had more pain & life style adaptations with RA than I ever had with the Big C!

rooney2011 profile image
rooney2011 in reply to AgedCrone

I do believe my recent onset breast cancer (1A,erpr pos) was CAUSED by biologic drugs. Period. Because now, pharma says...oh, really? Well, if you have cancer now...you better not take our drugs for another 5 years because...well, who knows why? Sore in so many places, I remain, confused.

AgedCrone profile image
AgedCrone in reply to rooney2011

I was really ill after taking Tamoxifen - which is supposed to be Gold standard (or Arimadex) after breast cancer...for 4 years ...I only escaped having a hysterectomy because a very switched on gynaecologist did the right tests.

A friend wasn't so lucky & had to have that surgery which together with the after effects of the cancer kept her off work for over a year!

I have just started on Biologics.....supposedly RTX is 'safe' if you have had cancer!

We'll see...but what to do...put up with the RA pain or take a chance?

rooney2011 profile image
rooney2011 in reply to AgedCrone

Interesting. What did Arimadex do to your female organs? I'm worried. Very worried. RTX? I don't know what that is, but seriously, my docs have said NO biologics for five years. I guess you must be past that. I am just being a worry wart, I know, but I am exploring other alternatives...low gluten perhaps some CBD (the pain killer in marijuana) and listening to doctors who might treat the gut instead of the "RA" - hence, the gluten issue. Check out the Cleveland Clinic RA labs.

AgedCrone profile image
AgedCrone in reply to rooney2011

It was,Tamoxifen that I took not not Arimadex....& yes it was 10 years ago.

In some cases (mine) it thickens the lining of the womb & causes great pain......6 months after I stopped taking it I had no pain.....I guess I should have complained earlier but I was so fed up after surgery & radiotherapy I just put up with it.

RTX is Retuximab ....also called Mabthera a Biologic which is given by infusion. I started it last month...it was the only one I was offered having had cancer.

So far, so good .....my aches & pains seem to be settling......so fingers crossed it suits me & I don't have to take pills any more.

Try not to stress......after having had cancer I am just so glad to be alive I have forced myself to look on the bright side......even when I was on RA drugs that weren't helping I managed to keep calm......I did research diet, but although I'm no foodie I couldn't face any of the diets, so I just eat what I fancy ....which my rheumy agrees with....but if you feel gluten free is the way to,go & your Rheumy is happy - go,for it.

rooney2011 profile image
rooney2011 in reply to AgedCrone

Great advice. In the end, we can read reams of advice but to our own bodies be true! Thanks for sharing with me, happy holidays!

seanjudge profile image
seanjudge

I'd personally trust scientists, doctors and pharmacologists over nutritionists and 'lifestyle gurus'. People from the US sometimes get very anti-'Big Pharma' but there are plenty of quacks out there pushing advice that ranges from ineffectual to dangerous, especially in terms of avoiding proven medicine. We don't have such a big problem in the UK because we have the NHS which has to be funded based on evidence.

Leonwp profile image
Leonwp

Fully agree but can i also offer they need to be more holistic as well please?

Gigi71 profile image
Gigi71

As a culture we want a pill for everything, the medical profession is moving away from the overuse of antibiotics. We do have a choice to change our diet. I have had autoimmune diseases for over 30 years and take medication, but also watch my weight as it helps my joints, also went on a low carb diet high protein diet 3 years ago for weight loss and was amazed at the reduction in my inflammation, without gluten and low sugar felt so much better. The Nhs does have guidelines for ' heathy eating' but are slow to recognise, that good fats and protein rebuild our bodies and sugar is an empty calorie. My opinion of course.

AgedCrone profile image
AgedCrone in reply to Gigi71

I don't understand why it is such a No No for doctors or nurses to say to an overweight person that they have to treat the excess weight before anything else.

It seems common sense to me that painful hips, knees, ankles would benefit from less weight to heave around....not to mention the strain on the heart!

But whenever this subject comes up.....there is always an outcry that it's being " fattist"...but if it will help just one person......what is so wrong with plain speaking?

seanjudge profile image
seanjudge in reply to AgedCrone

This does happen, there is no doubt that Doctors push for a healthy BMI. I was misdiagnosed for two years with gout because doctors would see I'm overweight and almost assume gout, even though my symptoms were clearly different to gout, and rebut my requests for a rheumatology referral. The thing is with weight, is there is no one size fits all fix (ironically) so changes can't be prioritised over trying to fix the other issues that may be exacerbated through excess weight.

nomoreheels profile image
nomoreheels in reply to seanjudge

The BMI isn't wholly reliable either unfortunately. I'm small framed, no scale to adjust for that. Conversely my h is large framed, how can it be a reliable way to use in a medical way or satisfactorily accurate?

seanjudge profile image
seanjudge in reply to nomoreheels

Well I think BMI is notoriously not suited to every body type, the obvious ones in particular being those with developed muscle mass. But it is a range, not a firm number and in that sense it's a pretty good guide.

Obviously it uses your height and not your 'frame. 'Framed' is not a medical term but body composition is. I'm 20st at 6ft. The way I 'appear' to carry my weight due to my body composition means I probably look to most people more like 18st.

Either way, I'm overweight and correctly that is what my BMI suggests. Those near the fringes of the boundaries may feel aggrieved, but they're a pretty good indicator unless you're a gymnast or weightlifter. It's a good quick reference point for GPs to use I think.

nomoreheels profile image
nomoreheels in reply to seanjudge

It's a problem & can cause issues. Well, as an example as odd as it may seem, my h has a naturally very strong triangular upper body shape. Proof of this was written as a cause by his Heart Surgeon in the clinical notes given as reason for 2 sternal closure failures following open heart surgery. His sternum remains partially unstable a year on. Another quirk of his shape is at one time he wasn't able to buy off-the-peg suits! He still has to have what he has found near suitable altered, a couple have even been retailored. Ok, not exactly relative but reason maybe some consideration might be made to the frame when working out a patient's BMI !

AgedCrone profile image
AgedCrone in reply to seanjudge

I'm at the other end ....underweight.....& the world & his mother think it's fine to give me dietary advice!

Can't win cant we?

seanjudge profile image
seanjudge in reply to AgedCrone

Indeed. Although I'll happily take advice from certain directions, I find most people that feel the need to give me diet advice have never had a weight issue. I've spent ten years yo-yoing and understand diet and nutrition more than most - it doesn't mean I've cracked implementing long term lifestyle changes though.

AgedCrone profile image
AgedCrone in reply to seanjudge

If one more person tries to tell me what to eat I will explode....especially after I lost a lot of weight on Lfl being told I " took too many drugs" for RA!

I have one dear friend,who weighed 12/13,stone & now weighs 20 due to an endocrine imbalance. He hates being so heavy, but he eats no more than before...it's just bad luck.

But as I'm sure you'll agree in the younger generation where 12 year old have Type2 Diabetes it is very worrying....but until someone faces facts it will continue.

teresa2711 profile image
teresa2711

Absolutely totally agree

janmary profile image
janmary

The 'leaky gut' theories have been around a long time and been used to explain everything from autism to cancers. Maybe, maybe not.....the proof isn't there. Some ASD children have been put on such restrictive diets that their development and health has been compromised.

Common sense has been around a long time too, and we should use it to take all the advice and balance it.

Doctors, especially perhaps those going into specialities like rheumatology, on the whole set out to do good and help their often moaning (with good cause) patients. They train and study for years and have to keep on updating all their lives. But now we all know better than them after half an hour on the internet. They are human beings who have illness themselves.. Perhaps we should have a more compassionate approach to our doctors?

AgedCrone profile image
AgedCrone in reply to janmary

Rheumatology is like Dermatology

No night call outs !

janmary profile image
janmary in reply to AgedCrone

What? Doctor wants normal life? Has a young family? Shocking! Obviously can't be a well motivated caring medic then..........

AgedCrone profile image
AgedCrone in reply to janmary

Twas ever thus...but seems much more prevalent now.

I don't have statistics but there don't seem to be many medical students with a fervent desire to become rheumatologists!

Anyone really interested in immune diseases seems to go into research rather than tangle with the likes of us who all present with different symptoms, impossible aches & pains & won't 'just go away' when the first drug doesn't work.

in reply to janmary

True, but compassion can wear a bit thin. Last year I was given a drug that was strongly contraindicated with another drug. Aparently it was my fault!

Amy_Lee profile image
Amy_Lee in reply to janmary

I asked my rheumy about the leaky gut when I visited him once. He said that as long as I had no issue to go to the toilet everyday, that proved well that my guts were in good order so no need to take anything to fix them. He said unless I had bowel motion problem then I would need something to fix it. His advice was not to listen just to simply anything out there. I trust him anyway.

rooney2011 profile image
rooney2011 in reply to Amy_Lee

But... leaky gut doesn't really have a lot to do with b.m.s but rather how the body overall responds to certain food groups, eh? I have just started reading on it, though.

Simba1992 profile image
Simba1992 in reply to rooney2011

A leaky gut means that the gut lining lets through food particles into the blood circulation. Leads to a reaction from your immune-system that identifies these food particles as foreign invaders. Every time you eat these foods the immune- system is activated and an inflammatory reaction ignited. When the gut lining is not working proporly food is not metabolized normally which results in symptoms like diarreha and bloating.

Amy_Lee profile image
Amy_Lee in reply to rooney2011

I really not sure because I am not in any position to tell hence I shall just listen to my rheumy and my body.

Simba1992 profile image
Simba1992 in reply to janmary

Unfortunately doctors who choose their specialty today are very much steared by Big Pharma. They diagnose by adding symptoms and are thought to use different meds to allivate the symptoms. Ofcourse there are meds that save lives and meds taken in acute diseases to help the healing process, this no one is questioning but the functional medicine doctors are more trained in figuring out the root causes of the condition and have gathered knowledge of how to support the bodys healthy immune system and are working hard on preventing diseases when possible.

So it is not a question of dumping all the knowledge rheumies have but leaving the door open to understanding better what another field of medicine has to offer. Like in all professionals, their strengths vary and we as patients should be able to gather all the info about the treatment of our disease from all sources available to us, even if it means listning to doctors representing functional medicine.

Dark ages? As in Medieval times? I think not! In fact there may have been some vauable knowledge about herbal remedies etc. at that time that has been lost, but also a lot of poison, real poison, administered. Plus we all know that the healers of the time came to be regarded with suspicion and genuinely 'wise women' were often regarded with deep suspicion and burnt at the stake.

Up until about 60 years ago or so there was little understanding of inflammatory arthritis which was generally lumped under 'rheumatism' and treated with steroids at best. People suffered, suffered some more and eventually often died prematurely due to excessive steroid use. I believe my granny was one such person. I am certain I would be in one hell of a mess had I been born even 50 years earlier.

I've only encountered one seriously unimpressive rheumy and his main flaw was that he under-treated my PsA. I think that other rheumys have been honest with me about treatment options, the limitations of the drugs as well as their potential. To date nobody has tied me down and forced me to take any drugs and I think that if I chose not to take drugs I could very likely negotiate an arrangement whereby my rheumy would simply monitor my condition rather than treating it.

We see so many people here who would give their right arm to get a chance to try biologics but cannot meet the still rather strict criteria. And to my mind that is the most inhumane thing. Forcing people to take drugs would also be inhumane. But since when did that happen?

I'm not against complimentary and alternative medicine by any stretch of the imagination. I can't tell you how many hundreds of pounds I've spent trying them out. However, I must say that those who think "big pharma" are in it for the money seem to fail to recognise that all these alternative programmes/treatments cost money too. There's also a misunderstanding of how the NHS works. NICE reviews drugs for safety, clinical efficacy and cost effectiveness. You may say that "big pharma" want people to be on medications but NICE are cautious, so how do you square that circle?

Hi Therapy6650 It is my understanding that most physicians (allopathic at least) only receive a single course or two in nutrition, so they probably wouldn't consider it that important or they would get more, right? Couple that with the high amount of training they get in pharmaceuticals and the stage is somewhat set I think.

As for dropping the clinical approach, I really think that most people that go into healthcare do so for the express purpose of helping people, so they truly think their approach is the right one. When I told me GP about what the rheumatologist' treatment was, she told me that her pathway is considered the "gold standard" for RA.

All things considered, it is not really surprising that they don't think of nutrition that way. But what is surprising to me is that they can be so closed-minded about alternatives, and don't really listen when someone really doesn't want to engage in the "gold standard"..

sylvi profile image
sylvi

WOW what some interesting answers there have been. I have read each and everyone of them and each of you have made a valuable point.xxxxx

My problem with "alternative therapy" is that it is not regulated, at least in my country. My government is cracking down on this and it has people in an uproar. The alternative industry are mad that the government wants stricter guide lines on their "health claims" labels. They don't want the government regulating natural products. My question to this is, "how can anything in a pill be natural?"

A natural path company that is big in Canada and the US got it's idea from pigs that bite their own butts. They assumed that pig butt bitting was similar to people with health problems. Thus the Pig Pills became a big business health pill supplement.

The product works only if you stop taking your medical prescriptions and take the natural supplements. If you still have issuses then you call the number on the "health bottle" and a person in a call center ( with no medical education) will advice you to buy more "health pills"....Well to make a long story short, people are dying. The Pig pills are always going to court.

Here is one of many cases of the damage of Pig pills being sold as "alternative medicine"

huffingtonpost.ca/marvin-ro...

Amy_Lee profile image
Amy_Lee in reply to

Agree fully. Many of the sales persons are just ordinary persons without medical back ground gaining knowledge only from reading the label and the so call in house products knowledge training, then out they go to push more and more products to the public to get more commission for themselves.

They do not know our conditions, they are in no position to tell us what is good or bad for us. This is just my own opinion.

in reply to Amy_Lee

Sadly the baby grandson of the inventor of Pig pills died because these pills along with corn syrup did not cure him of meningitis. The family put so much faith in these pills as it would be bad for business if they sought the advice of a medical doctor. These pills made them rich, and sadly their baby died. The family now is court ordered to have their other children checked over once a year by a real doctor. If they don't they loose custody of their other child.

Amy_Lee profile image
Amy_Lee in reply to

This is real horrible!! I do not understand how people can just make their money without any sense of responsibility??? I do agree we need money to live a healthy and good life, but we must earn it in a right way without hurting others. Cheating to get rick will not make us happy but guilty.

K9counselor profile image
K9counselor

Wondering if Tehrapy6650 (original poster) could supply the link that opened the original post - re: autoimmune deficiencies. Thanks!

I think people need to understand that a lot of these video's come out of countries that do not have the same government regulations or free government medical healthcare that other countries do.

There are countries that have to pay out of pocket for medical treatment....So.....many people have to make a choice of paying rent or being homeless to get adequate medical attention...Thus the "hidden secret" of diseases are sold at a price you might be able to afford.....and if you need to feed your kids, then you go to these "helpful healers" as they are cheaper.......Capitalism at it's worst....So...If you live in a country that care for it's people and provides healthcare, why would you send money to a country that doesn't?

It took 3 years and in the end with my own research before a consultant finally agreed with the linking of all the symptoms actually added up to my diagnosis, there is no cure but all the time and effort wasted in trust treating each symptom as a single cause disease, which could be "handled", didn't in the end add up to a cure or even mitigation of the root cause.

My own siblings, but not our parents or grandparents, have similar symptoms of varying degrees and all pointing to a genetic throwback that has surfaced in our generation. I accept that a cure is not possible and look to managing my medication, with my excellent GP's assistance, so that I don't overuse and will have for the foreseable future a path to manage the pain before I finally reach the maximum dose on any of them. At least I have a reserve of pain killers before the ultimate morphine sulphate has to be prescribed and I am not looking forward to that, so will defer it for as long as possible.

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