veganmua
Senior Member
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- London, UK
I'm getting so much worse. Looking for anything I can do to improve the situation
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The recent research has shown CFS patients to be short of amino acids and B12, which are in short supply on vegan diets, unless one is supplementing in robust amounts.I'm getting so much worse. Looking for anything I can do to improve the situation
That's the question isn't it. Are you familiar with Multiple Chemical Sensitivity?
As a Make Up Artist you may be unintentionally worsening your condition. Many have been able to lessen the severity of this illness by avoiding petrochemical, mold, and allergen exposures.
That's just a start though, there are no easy answers.
I do drink protein shakes and eat coconut oil for saturated fat. I also put liquid aminos (a condiment) on my food. I supplement methylcobalamin and hydroxycobalamin.The recent research has shown CFS patients to be short of amino acids and B12, which are in short supply on vegan diets, unless one is supplementing in robust amounts.
Many doctors are recommending ketogenic (low carb) diets and some patients are experiencing improved symptoms. I knew a glioblastoma patient who was on a vegan ketogenic diet, but it was extremely difficult to do. By and large, vegan diets are very high in carbs and lacking in protein and saturated fats (which the body needs, contrary to low fat dogma).
I won't say diet is going to completely cure us, but having a foundation of high quality nutrition is essential. Its worth a try...
ME has to be progressive in some cases, it's certainly my case... I'be getting slowly worse over the course of the last 20 years. However, I think overexcerting can accelerate the process, which is my case. Originally, I still was able to ride a bike for relatively long distances witouth PEM, today that's impossible. I'm sure that if I had abandoned the bike forever 20 years ago, started to extrictly avoid running for any length, learn to do every activity slower, my disease wouldn't have worsened nearly at all! That's why it is important to have a correct diagnosis as soon as posible, in order to stop going one's phisical limits and worsening the disease permanently
There's been a lot of positive dialog about it on this site, and it was mentioned as helpful at the OMF Symposium last weekend.I do drink protein shakes and eat coconut oil for saturated fat. I also put liquid aminos (a condiment) on my food. I supplement methylcobalamin and hydroxycobalamin.
I'm already on a low FODMAP diet for my IBS, not sure how feasible adding keto to the mix would be.
Do you have any links to research on ketogenic diet in ME/CFS? I'm sure I read somewhere that ketosis is not a state you should be in permanently. Thanks.
There's been a lot of positive dialog about it on this site, and it was mentioned as helpful at the OMF Symposium last weekend.
Alessandro Ferretti gave an excellent presentation to the doctors at the SHEI Conference. It's not for pregnant women, but should be ok for the likes of us.
Both of my CFS doctors (in different states) want me on it... I had first learned about it as a cancer-fighting diet during my cancer treatment. Dominic D'Agostino and Thomas Seyfried have good things to say about it.
Worth a try... I find I need 95g of protein a day, based on my labs, impossible to get on a vegan diet without too many carbs...
My CFS doctor said that already having autoimmune disease (Hashimotos and celiac) made me more prone to developing more autoimmunity. He considered both the Mayo clinic panel and CellTrend and we went with CellTrend as it was half the price and found adrenergic and muscarinic antibodies which explain some of my symptoms.I have a progressive form as well and often wonder if there anything I can do. So far I haven't found anything My new CFS doc suspects that my body may be shifting towards more autoimmunity (I already have hashi's) and I am getting worse and feel so helpless to stop it.
You could. Or perhaps you could try eating meat/fish/eggs which have important nutrients your body needs. You might try with some digestive enzymes and probiotics if you haven't eaten it them in awhile as your microbiome may need time to adjust.A vegan keto diet is certainly possible, but adding low FODMAP into the mix will be tricky. I guess I could see if a dietitian would be willing to draft me a meal plan.
I've been thinking of trying CBD oil, but I wouldn't want to try anything containing THC. I'm 'straightedge', don't even drink, and the idea of feeling intoxicated in any way scares me, to be honest!
My CFS doctor said that already having autoimmune disease (Hashimotos and celiac) made me more prone to developing more autoimmunity. He considered both the Mayo clinic panel and CellTrend and we went with CellTrend as it was half the price and found adrenergic and muscarinic antibodies which explain some of my symptoms.
Then, he found a hidden case of EBV that my immune system wasn't reacting properly to (didn't show yup on the common tests, but did on others) which he thinks is causing them, along with other infections.
We're hoping that IVIG and attacking the infections may reverse the antibodies...
Maybe your doctor hasn't found the whole picture?
Cannabidiol (CBD), will not intoxicate you and will give you many of the benefits of proper cannabis.
In London, I bet you couldn't travel 1km without finding a shop currently stocking a bottle.
I've been looking into it and it seems CBD is metabolised by the same liver pathway as my antidepressants, so taking them together could cause toxicity. I'm already on a very high dose, so I doubt it'd be safe!