Has anyone got any alternative health ideas on how to get well as well am researching through trial and error a different approach to getting well. I am very ill almost bedbound with no improvements in health. Nothing has helped me in fact tablets and medication have made me much worse. My teenage son is now getting ill with some of my symptoms so I feel I need to do something. I have M.E, fibromyalgia, asthma, gerd, polyps, fibroids, connective tissue disease, haematomas on my liver, cysts on my ovaries, frozen shoulder, endometriosis, virtago, multiple food and medication allergies and intolerances plus suspected lupus and sjorgens amd also possible MS was discussed by a gp who has sent me for a brain scan which are currently being investigated. Also seeing a rheumatologist as he thinks that lupus and other conditions are to blame for my ill health. My gp who has now left the practice recommended my gallbladder needs removing so he sent me to hospital to speak with the surgeons but because of cut backs they won’t operate, they said it wasn’t severe enough. I saw a hospital dietitian who was useless who just said eat what you can and avoid what you can’t. Another dietician Gave me a fodmap leaflet and sent me on my way even after I said I have tried it 3 times already. My rheumatologist just handed me a leaflet on lupus medication but I still haven’t had the medication just a steroid injection which did help me. Have had a few A and E visits with chest pain and pleurisy but they can’t really do anything other than give you tablets keep you in hospital them send you home. I have been attending a migraine clinic for 2 years and can’t bear light or sound. After 2,years their only treatment is pills which I don’t tolerate. It’s just that more should be done for patients and Drs and hospital are failing their patients. There’s very little follow up and you have to fight to get heard and treated. Really I waited so long for these appointments and this is the best they can do. I did get my medical notes and found information in there very helpful. Conditions I didn’t know I had not was informed about and recommended treatment plans that wasn’t followed through with. A nurse friend who has just retired has stated that you have to be critically ill before they will operate or help you as the NHS is overwhelming under budget and is struggling. I will cure myself. Thank you for your help. I feel at an all time low as I have white blood cells in my urine after telling them for a year I was in pain with my bladder so am now on antibiotics and a new dr is sending me for suspected ovarian cancer tests within the next 2 weeks feel I owe it to my son to get well for both our sakes. Any advice on alternative medicine as nothing so far has worked for me. Thank you Elena
Alternative radical approachs to treating auto im... - LUPUS UK
Alternative radical approachs to treating auto immune diseases and other illnesses.
A big problem here is that people have got used to the idea of just medicating away pain or unwanted symptoms. Problem is the pills don't address the original cause of the pain or symptoms so the underlying problem remains. But they often tend to work quickly to provide SYMPTOM RELIEF.
It is unrealistic to think you will feel immediate effects if you really are attempting to resolve root causes. There may be a multitude of steps required along the way.
It may also involve dietary changes together with exercise plans and a totally different approach to life if the current conditions are not optimal for health.
When all this is taken into account there needs to be a real ongoing determination to rely on anything other than pills.
But its also important to understand you only have choices in the matter if you act before you have reached a point of no return.
Thank you so much for your reply. Yes I wish I would have helped myself years ago maybe I wouldn’t have gotten this I’ll if I had done so. Will heal myself somehow without the pills and will succeed as I am so determined to be well. Have a great day. Take care. Elena
Its not a blame thing. We can only do what we can do with the information we have at the time. Healing could take a long time without supportive help. Not least as you may travel down many dead ends on route.
I wouldn't suggest anyone just goes cold turkey from their regular meds.
You need to build up your body a good bit first.
But there is something I always try to remember. The body is constantly in a state of repair and renewal. That's how hair and nails grow and cuts heal. Providing the best possible nutrition for your body is more likely to develop strong healthy cell renewal. So on that point alone I think it's worth eating as best as you can. Make any goals achievable by breaking them down into smaller parts. If you miss some goals look at the general trend. There are no timescales set in stone so do what you can do.
Good luck
Thank you for all the advice it makes me realise I need to be sensible about this as it’s not an easy thing to do but I must do it or I will be forever like this. Thanks for the support. Have a great evening. Cheers. Elena
Its not easy or everyone would choose to do it. Most still believe that if they keep on taking the meds long enough they will buy themselves enough time for a cure med to be found.
But here is where I disagree with that approach. Its my personal opinion. The pharma companies largely fund medical research directly or indirectly. They do it with the hope to find a new medical product which will make profit for them. But their conundrum is that if people truly got well there would be no repeat sales for their products.
So where is the incentive to find cures. That's why I believe we must be our own best advocates. We HAVE TO do our own research and take more responsibility onto ourselves to find the best way forward for us.
It's not wrong to take assistance from drugs along the way, when they are required.
But we HAVE to each learn the basic tennants of health and nutrition in order that we may make informed choices when shopping for food. Again it's not a blame thing but we have to learn and take account of the fact that we should fill up on nutritious foods before reaching for the tantalising treat or snack.
Treats and/or snacks appeal to the parts of the brain that are pleasure centres, so it's not an easy habit to break. But if you don't break the habit nobody else is going to be able to do it for you.
Don’t just stop meds’ I believe the allergy bit is the start of all our problems. Look into a i diets See a good herbalist Go slowly and you will improve If you don’t at least you tried to help yourself Good luck x
Thank you for your advice. Yes I must admit I do need the steroid injections and tablets as they at least do help. The antibiotics are helping as I have a really bad water infection so some medication is helping. Yes a herbalist sounds like a great idea. Maybe sometime in the future I will post my research and what has helped or hindered me along the way. Have a great evening. Take care. Elena
I have just read the clever guts diet by mlchael Mosley. (Library) we have to take antibiotics for our infections unfortunately but this is an interesting take on our health the diet makes sense xxx
Thank you for your advice as I have never heard of this diet. I will look into this as I need much more information before I can start to get well. The more I know the faster I can start a very specific and individual to me diet. I am allergic to everything so trying to figure out what I can and cannot eat will take time and error. Have a great evening. Take care. Elena
You will find your more intolerant than true allergic Try to give up gluten first Amazing results for me We are all different tho. Xx p s it’s so boring xxxxx
Yes I agree I went private to see an alternative allergy specialist and he was so accurate he knew all the stuff that made me ill. I thought I was a coeliac but it’s an intolerance so not as bad. I am climbing the wall every thing I eat tastes horrible but I have to see this through to the end. Just had a smoothie with pumpkin seeds honey and hazelnut milk. But if I start seeing a difference on this new diet then I have to keep it up for life. Am so glad the gluten free approach has worked for you. It’s hard to stick to as we are used to a western diet. Am craving for a chocolate bar but no I can do this. Have a great day and thanks again for the help and support. Elena
Hi, as mentioned, see a herbalist. They will try to get to root of things and can help with digestion, hormones, liver support, mood and inflammation. For a start.
Healthy diet - organic, non processed and including good fats and where possible exercise. Look at things in a naturopathic way. The body is an amazing thing. Remember though that the longer you have been ill, the longer it will take to get better. Pills will disguise and suppress.
Thank you for the advice yes I think exercise may help me as am constantly sleeping which isn’t healthy. Will research natural remedies and will patience and determination I will get there. As I was told quite recently I have to do this myself and break the habits that are making me unwell as no one can do it for me. I hope you have a great week. Take care. Elena
Look up Helminthic Therapy wiki on google and see if you think it’s something you might be prepared to try. I’m about to and thousands already have.
Hi thank you for taking the time to give me the advice I haven’t heard of this therapy before so I will look it up. I hope it works really well for you and I will definitely give it a go.
I am in a big mess too. All the things you mentioned. Dr Sarah Myhill good place to start. Also b12 injections. . I do these myself. No one has a clue. How very ill we are. Love and healing.x
She doesn't seem to take new patients anymore
Yes I totally agree most people do not always understand how hard it is to have to cope with multiple symptoms on a daily basis. Will look into the b12 and dr Sarah myhill. Thanks again. Have a great evening. Cheers. Elena
Have you been tested for Lyme disease?? A bacterial parasite like Lyme or viral co-infections could be the cause of your symptoms. Lyme- babesia and ones like bartonella can mimic just about any autoimmune disease, and if not treated it will only get worse. Please find a functional medicine doctor and ask them to test you. I have Lyme and it mimics all my Lupus symptoms except worse. Be aware that it can come up as a false negative. Lyme bacteria can move into your organs and out of your blood after a while. This could explain your son as well if he has it too. OR you have some kind of toxin in your environment. Have you ever had your water tested?
Omg I never thought about Lyme disease I am seeing my dr next week I will definitely mention it. Will have a look online and read up on it. I haven’t had the water tested but I am highly allergic to tap water. It’s one of my top intolerances have had mineral water since I was 17 am now 52.
Do you adjust your diet at all? Severe food intolerances from Leaky Gut can cause severe problems as well. I found that gluten was causing most of my problems. After eliminating it completely from my diet my symptoms improved by about 80% in less than 2 weeks. I also had some blood tests and found dairy was also a problem. Later had more tests done to find about 20 other foods. I don’t have all the pain I used to and did it all with food, essential oils, and supplements, no drugs. Except when I got Lyme last year, that has to be treated with antibiotics. I recently had some new tests that were not around back when I was diagnosed with Lupus, that are very specific markers for Lupus from a certain lab in the US, and it came back that it doesn’t look like I even have it! My doctor isn’t exactly sure what caused all my symptoms but he suspects it may simply be leaky gut that caused it all. Look up that term if you’ve never done so. A regular doctor would most likely dismiss it. I pay to see a functional medicine doctor because they seem to be the only ones that really know what’s going on in the body and how to correct the root problem, not just treat symptoms.
Hi Shelly yes I have leaky gut and Candida which explains why I feel so unwell. Have just seen an alternative therapist who has recommended a Candida special diet and I am taking acidophilus and digestive enzymes. Have gone gluten free and Have done this before in the past and yes it definitely makes you feel better. Hope you too are well thanks for taking time to send me the advice. Have a great week.
I’m glad you’re seeing an alternative therapist. Sounds like a great idea. I encourage you to try gluten free again. It’s veen 4 1/2 years for me. I’m feeling better this year than I did any of the first years. The body can heal if given the chance but it’s not a quick fix. Gluten is a huge factor in leaky gut because it causes the small tears in the lining of the colon. Because of leaky gut a lot of my micronutrient levels were very low. Supplementing has helped me feel more energy as well. Zinc, vitamin d, vitamin a, magnesium, iodine, etc were all very low. My hormones were also either very low or high, due to the stress on my body, which contributed to a lot of other symptoms. I have had to continue to supplement at some high doses to keep a normal level of most of them, as directed by my doctor.
Am so glad you going gluten free is helping you I think it’s the only way forward to getting better and paying attention to our diet is always a good start it’s what makes us feel unwell or well. I just wish I could sprinkle some magic potion on everyone and we are all well. hope you have a good week. Thanks again for all the advice and support. Cheers. Elena
I am so sorry to hear of your pain 
It is not a cure but may help alleviate some of your symptoms, I found this study about vitamin D helping lessen Lupus flares. Maybe if your levels are not optimal a small amount could help?
I also agree with the above posts especially about B12.
vitamindcouncil.org/study-o...
I also experience issues with endometriosis and although not severe the 2 things that helped me most was ensuring my surgeon excised any endometriosis at the root during surgery and avoiding too much phytoestrogens/parabens It actually helped my bloating which surprised me.
Omg I have severe bloating I didn’t realise it could be connected to parabans and endometriosis do thank you for the advice. Have a great week and thanks for letting me know. Elena
I think that retrying what we have used in the past but with some modifications and taking a new approach to them may help in many cases. We should repeat some processes we used in the past which failed to give us a good result. We should review them and find out their weak points and strong points. Maybe we have failed in the past to look carefully at our mistakes and errors and now our experience might help us not to repeat them but use them in a fresh and new framework. Hope you success.
Thank you for your advice yes maybe starting from scratch and re evaluating everything from scratch may help me. Thanks for taking the time to reply. Have a great evening. Take care. Elena
Hi Hidden ,
I am sorry to hear that you have had such difficulty getting a satisfactory diagnosis and a treatment regimen that works for you. Has your rheumatologist confirmed a diagnosis of lupus or are they still doing investigations? I understand you have been on many different medications, but apart from the steroid injection, have you been given any other treatments for lupus?
I think it is very important to examine your lifestyle and see if you can make any changes that may help to manage your symptoms. It is a good idea to discuss any alternative/complementary therapies with your consultant before starting them in case they have any potential adverse effects or interactions with other treatments that you are not aware of. It is also essential to remember that lupus presents differently in everyone and therefore what works for one person may not work for another, or could be potentially harmful.
There is no cure for lupus at present, but with a combination of the right medication(s) and lifestyle adjustments it can often be effectively managed. It can be a long road to finding the correct treatment plan, especially if you are very sensitive to medications and don't always tolerate them well. I would encourage you to continue working with your consultant though because they can monitor you carefully.
Hi my blood results and symptoms suggest lupus. Rheumatologist has told me if I improve with the lupus medication at the end of a six month trial I will get a lupus diagnosis if not he will look at other causes. It’s just so frustrating but have radically changed my diet am now vegan, have given up sugar and am on the gluten free diet. I have seen some improvement and off to see the rheumatologist later today where I will be given the lupus medication and will have another steroid injection. Have bought a vitamix and have been in the steam room each day and I am on bottled water. Seeing 2 alternative therapists within the next 4 weeks and am constantly online researching auto immune diseases. Have got rid of anything with patabans in and have used mineral water, lemons and aromatherapy oils to clean with. I will do whatever it takes to get well. Am on ashwaghanda and other herbs. Am currently selling most of my posssesions to save for a gallbladder operation and a full hysterectomy privately as the nhs won’t fund it. Thank heavens I still have my sense of humour it’s what helps me keep going. Thank you for your reply. Have a great week and take care. Elena
Hi Hidden .
Good luck with your rheumatology appointment later today. Let us know how you get on. Is it hydroxychloroquine that you will be starting on?
Have you discussed the herbs you are taking with your rheumatologist? I ask because reading briefly about ashwaghanda, it suggests it is contraindicated in lupus and other autoimmune diseases because it might cause the immune system to become more active which could increase the symptoms.
Hi just spoke to my rheumatologist I asked about herbs and change of diet he said I should be fine but to let him know if I have side effects from the hydroxychloriquine I suppose it’s trial and error. I will stop the ashwaghanda if it’s not suitable. Thanks for the advice. Cheers. Elena
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