I’m new here. I was diagnosed with Hughes syndrome 20 years ago after suffering multiple miscarriages. I began to take 81 mg aspirin and had two wonderful boys after that. I’m 50 years old now. I’ve always lived a healthy lifestyle. Last summer I started to suffer stomach problems while eating anything. My hair started thinning, platelets dropped, heart palpitations, torturous skin itching and other annoying symptoms. PPI’s made for excruciating stomach pain and after that my dr told me he couldn’t help me and to cut my hair to make it look thicker United! After an entire evening of crying out of sheer frustration, I began a whole foods diet, researched supplements and stopped the PPI’s and aspirin. I worried about the aspirin but felt I had no choice but to go natural. After 3 months my hair stopped thinning and the palpations and itching stopped completely. For the first time in years, my hands and feet warmed up and no longer hurt from being so cold. It’s now six months since I changed my eating. I’m almost finished the book and am about to dive into this eating program. I don’t believe in fad diets but I do believe in this lifestyle change. It’s due to the fact that cutting out all processed and crappy food improved my life drastically since last summer...I had to do something since my dr was utterly useless. Scary. Has anyone else read this book and if so, is anyone else following the eating plan? I find the concepts very intriguing. Thanks for taking the time to read my post. 😀
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Bluebelle50
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It is very, very important that you discuss with your doctor any changes before they are made.
No one should stop taking their medications! There is a belief that if something is natural, it cannot harm. This is untrue as many plants can kill, especially if there is an underlying disease.
On the other hand, ASPIRIN, is natural. It’s from the willow tree and used as a medicine for hundreds of years.
Having a healthy diet and lifestyle is important for everyone.
Hi there, sorry for late reply, I live in a coastal area, and for days my internet has been intermittent. Your GP and Consultant (main one for Hughes SyndromeAPS), need to guide you with any new supplement and diet. I myself are not on Warfarin, other things plus Aspirin, however any new supplement and my diet itself which is low G.I and also gluten free and Mediterranean, is carefully talked about at any appointments, and I check with all the medical consultants in the picture with me, before adding or stopping anything.
I did a private Thyroid panel years ago, alongside the NHS testing, and my own panel which, naturally I sent to my medical team(s), showed I had very low Thyroid function, my B12 was struggling and my Folate and Ferritin and that my vitamin D needed increasing, we are all on a learning curve with this disease. I am not a Coeliac but eating gluten, even by mistake causes an allergy attack, bloating and a worsening of my symptoms, again, all monitored by my doctors. I hope you continue to work with your doctors, and if they are not up to scratch, you may have to think of a new one.
Exactly! I would love to have a different one but everyone in our small town has a closed practice. He is retiring soon...that’s my only saving grace. I need a specialist, as autoimmune disorders run heavily through my family.
I must congratulate you for choosing a healthy lifestyle but not for cutting out the aspirin.Iwouldnt of omitted that aswell.Do you have a specialist in APS or just a gp that diagnosed you.You need one that understands this disease.
I was diagnosed by a specialist 20 years ago because I had recurrent miscarriages. The specialist was a gynaecologist. I’ve never even heard that there was an APS specialist from my GP. I started the aspirin again. Even as far as the aspirin, my GP has never even brought up the importance of it.. it is all so maddening, as my mother was also his patient. He originally passed off her Ovarian cancer as a bladder infection, until I pushed him to do more for her. She eventually passed away after a long battle with Sceroderma. You would think my GP would take more notice of our family history. Well he is retiring soon...thank god!
Hello! Great to hear your lifestyle changes have had such a wonderful impact for you. I absolutely wholeheartedly agree with you that lifestyle is super important and we can all help ourselves by getting a really healthy lifestyle going. I have been eating according to the Plant Paradox for over a year now and love the changes in my health - I am not longer anxious, my weight has stabilised lower than previously (I'm not at all overweight but it's great to have it stabilise), I love the food I eat; I have more energy than ever, I sleep well, I have been able to vastly reduce any asthma medication I had been inhaling, I have been able to come off HRT without having crazy hot flushes and sleepless nights and hair falling out. It has been a fabulous year of getting healthier and better wellbeing all round. I love that I don't have to rely on any pharmaceutical medication now, although it is nice to know that if I had an asthma attack I have it for acute situations, but not to treat a chronic issue. I have also been working with a functional medicine practitioner to make sure my microbiome has been nurtured and rebalanced properly with some targeted probiotics and Vitamin B complex. Another really important aspect of my lifestyle changes that has improved my wellbeing has been regular exercise (I love the 5 Tibetan Rites) and relaxation to reduce and manage stress - super important!
Congratulations on making it happen for yourself - we can all learn from this!
Thank you so much! It feels great to have a “pat on the back” after such frustration with my GP and trying so hard for my health. I’m actually walking on my treadmill as I type this. 😀 I can see that your body rewards you for treating it nicely. I’ve been thinking about seeing what a functional doctor has to say, while I wait for my doctor to retire. Good for you for eating well and exercise. It can be very hard to do. My husband and our sons still eat junk but besides nagging g them a bit, I manage to ignore their snack choices. Actually I don’t really even want junk food these days so that’s a good step forward.
I’m glad you’re feeling better. That said, when we have a healthy gut we are able to digest the components of plants that are sometimes harmful otherwise (eg oxalates, lectins). The PPIs lowered your stomach acid, which was probably the last thing you needed. We need stomach acid to break down our food and also to protect from pathogens. Most people are struggling with some level of dysbiosis, especially with the symptoms you’ve described. And of course with AI disorders. A GI Map test was super helpful for me to figure out what was going on... and to be able to eat again. At one point I was down to only being able to tolerate about 10 foods after going low oxalate... it was a disaster. Slowly I’ve healed my gut and can eat most foods again (except allergens like gluten, dairy, etc). Happy to talk more about this if it resonates. My research for self and in my clinical practice shows that any long term restriction of foods/food groups is harmful. We need a well varied diet for optimal wellness.
I’m going to look into what a GI map test is. I was reading recently about what you stated...that you shouldnt restrict yourself down to just a few foods. Happily, I can already introduce a couple of new things. I have also been reading about the horrors of lectins...especially if you have autoimmune disorders. I only wish I knew about the importance of keeping inflammation out of your body when my mom was alive. She had Raynauds syndrome, APS and finally, Scleroderma. I have Raynauds and APS but I think inflammation is one of the triggers for autoimmune disorders. I’m eating as healthy as I can to also avoid being diagnosed with any more disorders.
Yeah, it’s definitely a journey. I’m a practitioner who runs GI Maps regularly for folks struggling with health issues. It’s changed my life personally and professionally. Happy to share more if you’d like! Wishing you all the best!
Aloha Kelly. I’m a PhD level clinical health psychologist with a specialty in nutrition psychology, autoimmune disorders, chronic illness, functional medicine. I work with a naturopath and am able to order specialty labs, including GI Map, NutrEval, igg allergy testing, comprehensive thyroid testing, hormone testing, etc. I am happy to help people find practitioners in their local areas if that serves them best - I know what to look for in practitioners and have colleagues in different areas. I also do distance consulting if that’s helpful, but require that any suggestions made are cleared with a medical doctor/specialist locally before making any changes (that’s in my contract).
My mother had severe dementia before she died. She was an only child, but her mother, and all 6 of her great aunts had dementia. So, as info hit the media stage about how the crappy food most of us eat is related to dementia and AI disorders, I took myself up to Functional Medicine at Cleveland Clinic in 2014. I was placed on an elimination diet and --- everything changed! I had been diagnosed with APS in 2001 and all the scary symptoms disappeared on warfarin. But prior to my CC trip, the fatigue, the brain fog and my rheumatoid blood factors were all drifting up.
But that CC elimination diet reversed the fatigue, the brain fog and my blood work numbers fell from scary to what one hematologist called " boring." That same heme does not believe I have, or ever had APS despite previous blood work and symptom history. He advised me to stop warfarin. And indeed, I remain symptom free when my iNR is as low as 1.75! ( prior to CC consult my lowest effective number was 2.8.)
But particularly given the very murky understanding about the complexity of the coagulation cascade AND immune activations, I do not plan to totally stop warfarin for fear that those migraines and mini strokes may return.
So I am so glad that you gave up the crappy aspects of our Western diet and reaped the health rewards which come from that change.
I know I still live in a chemical infested modern world. And my epigenetics have no doubt been already permanently effected by living in this world. So, until and unless the biochemical and epigenetic details behind AI diseases are understood I will remain on warfarin. Given my history I am sure warfarin is doing something good in addition to just the blood thinning thing.
So to conclude advice based on my experience: Hooray for trying and benefiting from the plant paradox diet! Find a new GP, and consider traveling ( if required ) to a functional medicine doctor. But don't stop medication without a good doctor consultation as deducing that modern medicine is as crappy as modern diet is like comparing apples to oranges.
Thank you for sharing your story. Your advice on the aspirin is spot on. I started taking again. Lauren helped me with names of functional doctors to look up. My dad has dementia also. I HATE that disease for taking him from me. I kept him living independently until two years ago but he’s in a home now. I’m fortunate to be able to visit him every morning. Since embarking on my own healthy eating lifestyle, I’ve been noticing how riddled his diet is with processed food, grains, all the wrong stuff. I’m going to talk with the staff and start bringing him meals that I make to see if it can help slow progress of the disease. It can’t hurt anyhow. I’ve been trying to reduce my family’s toxic load. Changing plastic containers for glass, non stick frying pans for ceramic and so on. It’s a process though, everything is costly but you do what you can. No wonder autoimmune and cancers are on the rise with what our poor bodies are bombarded with.
My story matches yours exactly. I went to a doctor who uses natural therapy and he gave me supplements and homeopathic remedies. I eat a healthy diet and exercise regularly. Since starting this regime several years ago, I’ve felt well and not had any itching or palpitations although my hair is still not great but this may be due to the warfarin. I need to keep taking the warfarin as I have very high levels of anti phospholipids and I think it would be very risky to stop them.
I’m sorry you have to go through this also. It does furl good though, to know I’m not all alone in this. I’m taking the aspirin again. I just wish I could find a dr that practiced a Eastern medicine alongside with Western medicine.
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