I have totally climbed out of my box and been to see a naturopath yesterday.
My lovely new general physician doctor has hit a brick wall with investigations. He won't admit he's defeated but he just says he'll follow up in 3 months and see if anything more develops in the meantime!! Like I just need more things to develop right now!!😥
My husbands boss recommended that I go and see the naturopath that he and his wife use. I am not a 'go natural' kind of a person but I bit the bullet and made an appointment. She was really nice and came to the same conclusion as me that I have seronegative lupus.
In the next breath she tells me that she wants to put me on 3 different herbal remedies to combat inflammation and boost the immune system and come back in 3 weeks to see if it has made any difference.
Whoa!! Wait!! Says me. I'm not sure if I'm even ready for this. She has recommended:
Mongolian Seabuckthorn capsules, AV/AT capsules and quercetin powder.
Has anyone here had any experience with these remedies?
I am about as skeptical about natural medicine as I am about conventional medicine. I won't take anything until I'm certain that the benefits outweigh the risks.
On the other hand I am getting desperate. My life is slipping through my fingers. I am having a severe CNS day today! I am in the mood to ring up any doctor I can think of and DEMAND treatment based on symptoms rather than bloodwork! I am very tempted at the moment to make an appointment to see someone like dr graham hughes just so I can be heard. ( I was reading some of his publications last night and he seems to be an oasis in this desert. I know there a lot of people on here with personal experiences. What is he like? I am seriously prepared to come to London from Melbourne, that is how desperate I am!!!😭
Sorry it's combining two things into one post but I'm having a bad day! So there!
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1985mum
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Please give this natural treatment a chance, it's much safer than any conventional drug and if she is a good naturopath giving the correct herbs etc then you could really make a change to your health. I have had lupus for over 20 years and after feeling let down and being slowly poisoned and feeling worse I turned to Homeopathy and herbs etc For the last 4 years there are now no signs or symptoms of lupus at all and my doctors are amazed! I was so happy that I decided to train as a Homeopath (clinical training of 4 years) and can now help others. Its all been a huge learning experience for me and I'm thankful for my happier healthy days now. Don't give up and do what's best for your body.
It isn't appropriate to suggest that 'natural' treatments are "much safer than any conventional drug". 'Natural' treatments can also potentially cause a wide range of side effects and interactions with other treatments and many have not undergone trials in a clinical setting to prove their safety and efficacy.
I'm really pleased to hear that you have managed to get control of your lupus and you are feeling happier and healthier these days. It is important to bear in mind however that lupus presents very differently in everyone and not all patients can manage their symptoms without medication. We would encourage anybody to discuss any complementary or alternative treatments with their consultant before starting them so that if they wish to go ahead and try them, their medical team can observe and advise them.
I understand this and this is the reason why it is important to consult with a professional and highly qualified practitioner who will take each patients individual symptoms into consideration and safely prescribe for them. I know that lupus presents itself in so many ways which is why an individualised system of medicine, in my own opinion, is the best way forward whether that is conventional or alternative. Good luck and be well everyone.
Thank you for your input lorilou8. It's great to hear from someone that has benefitted from an alternative approach. I realise that there are many success stories out there. I'm basically probably just trying to find out if anyone has tried or had experience with those specific remedies she has recommended.
So sorry to read your general physician was stumped about your health. Could you not see a Rheumatologist in Australia?. Be very careful with those herbal remedies, last thing you need if you have a connective tissue disease is to boost your immune system!. I've had a flare trying these remedies with no guarantee it will suddenly show in your blood. All the best with whatever you do, you'll get there but it can be a long, hard road sadly. X
That's exactly what I was thinking Misty. Why boost the immune system if it's already revving high?
I have seen one rheumatologist here that looked at me for 5 minutes then said I don't have connective tissue disease. That put me off randomly trying another one and I can't seem to find any easily accessible rheumatologists who have a special interest in lupus/aps/sjogrens rather than RA. That's why I'm keen to see someone like dr hughes.
I know of several people who have seen Dr Hughes and say what a nice man he is and so experienced. I do understand why you feel you could make the huge trip to see him!. You have also got to think about follow up care especially if on drug treatment!. There must be a Rheumy in Aus that has an interest in sero negative Lupus and APS. You could ask on forum if anyone knows of somebody. There are quite a few members from different countries you might be lucky. I'm relieved you were thinking the same thoughts about those remedies and I wish you lots of luck on your diagnostic journey. X
I would urge caution with any alternative/complementary treatments/therapies and diets and encourage you to discuss them with your consultant before trying them. Some of these can have adverse effects in complicated conditions like lupus (especially if they are boosting the immune system) and can also interact with a variety of medications.
Due to lupus being so varied, what works for one person may not work for another and can be potentially harmful.
Mongolian Seabuckthorn can slow blood clotting so if you are on any blood thinning treatments such as aspirin or warfarin you must use caution.
AV/AT contains Andrographis which might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases (such as lupus). In addition, these also slow blood clotting.
Quercetin can cause headache and tingling of the arms and legs. Very high doses might cause kidney damage. They can also interact with antibiotics and drugs which are changed by the liver.
Gosh I can feel it! I've no ideas about 'go natural'..but I do understand your frustration.
I'm writing because I've just returned from Melb-Ldn-Melb, no I didn't see prof Hughes but my neck craned and my head hit the window as I spotted St Thomas and Guys 🏥...think that's the Mecca . And l said to my husband..lets stop here, I can feel a cure coming on 😅.
It is all very well saying it's natural so it can't be harmful: deadly nightshade is natural and it is certainly harmful!
There are natural remedies that may help ameliorate some of the unpleasant effects of both illnesses and treatments - but it is very dangerous to mix them with not only medications but also other "natural" remedies without very careful consideration. And the advice from many people who offer these substances is often not particularly informed.
This! I am a herbalist, and have been for some time, but it makes me wince when people thinking 'natural'='safe' and 'chemicals'='bad'. EVERYTHING is chemicals, ladies and gents. Organic chemistry is just a string of elements, and that is in everything, including plants!
Cures for ailments which currently have no cure is big business; I remember the same furore when I was first diagnosed with fibromyalgia, and there were a thousand and one books from people who claimed to be cured, and they could share their miracle with you - for a fee! Now, that isn't to say some things might be effective, but unless you've got a very mild case, it's doubtful cutting gluten out of food is going to 'cure' you. Help some inflammation, maybe, but everyone is different. As I've described in the past, I have to eat a diet heavier in meat protein than most people, and all the suggestions of going vegetarian/vegan would probably kill me (soy allergies). I've tried a lot of different things, some of which helped, some which harmed, some which were nearly disastrous (I'm looking at you, chaga!)
Herbs are not automatically safer - they're made up of chemicals, just like the medication you get from a Doctor. I personally have decided I can combine the two with full disclosure with my specialists and my own knowledge of my body, but I'm not going to turn my back on meds, because meds work. Side effects are a fact of life, but side effects happen with alternative medicine too (I got the biggest cyst ever from an acupuncture session, which later required surgery when I had a flare).
Use caution, weigh up your options, and don't throw the baby out with the bathwater. If one medication didn't work, it doesn't mean they ALL will fail - it just means that one didn't work for you. And it's the same for alternative remedies.
I totally agree Silvergilt. I've had a bit of time now to research on these herbs. One of them seems ok for reducing inflammation, another one seems ok for balancing muscle tissue etc but it comes with a warning to not use it where there could be kidney issues and the last one is for boosting the immune system which is totally not ok!!
Thinking back, I'm horrified that she was so quick to want to get me on these. Firstly, I don't actually have a diagnosis yet so there's no certainty to what disease process she's dealing with and secondly, she never asked me anything about potential liver kidney problems that can be so common with lupus!
I don't want to sound too negative, but if the naturopath has an understanding how lupus works why would they suggest something to boost your immune system (which is doing the damage!)?. I would make sure that you are confident that they understand this disease fully before taking their advice.
Hi I did see Prof. D'Cruz in London Bridge Hospital, a colleague of Prof Hughes, as there are no lupus specialist in my NHS, nor in south Wales. If you do decide to travel to London, I provided my medical history, a diary of events that led up to my diagnosis and any tests I had done so that I could get the most out of my appointment with him and it also helped with costs and time.
I am thinking of a follow-up appointment with him as I am so frustrated with the doctors here who just nod their head at me and just waste both our time and refer back to my GP to manage any new symptoms (she laughed when she heard that). In fact my GP suggested I go back to see the Prof. as she was coming to my conclusion that I am waiting my time here. A day there and back so need some holiday time to arrange an appt.
Not sure of going natural, my sister from the states sent me some lupus books, some all natural. I ask the Prof about these diets and he had no evidence to say that it would help. We are all different if I read the many on this site and I will keep an open mind, but for me I am just trying to do the best I can each day, steady as I go with the hope of having a little more energy someday...Good luck. ML
Hi 1985 mum....i believe you are heading in the right direction. My opinion based on my own r&d on myself. I dont always agree with natural treatments. I talk to nutritionists' at health food stores for over 2 years now. Gone to lectures on certain products. I take an enzyme to break down fibrin in the blood (too much fibrin causes clotting) ...for 2 years now. Some herbs are too powerful for my body. Some cause an unpleasant reaction,like medicine, and i stop using and try something different. I read a lot. I research and read and read.
The thing that is working best for me now, is an anti inflammatory diet. The program i am on was created by a doctor and his wife who is a nurse. Fantastic. Not an easy program, but i believe the inflammation is going down in my body.
Best advice I can give, pay attention to how your body reacts to these herbs. I stay away from herbs that have any adverse side effects. There are ones out there that are known to have no side effects. Those are the ones I try. I do make turmeric, ginger teas. But, since I have scarred kidneys, i have to be careful how much turmeric i have since there is a lot of potassium in turmeric. And my kidneys cannot process the high potassium. So, i limit how much, and how often I take it.
You are your best advocate! Keep reading and researching. Lupus is your bodies immune system gone out of control, but it doesnt mean boosting your immunity is bad. I take vit c every day for immune support. When i get sores in my mouth or sore throats from stress, the c helps me. Sore throat goes away. I dont have a side effect that causes discomfort from taking c.
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Some natural Medecin which may help
Undifferentiated Connective Tissue Disease
Any advice regarding dealing with the nhs
