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An update
Hi everyone,
Just a tiny update, and desperately needing some insight again… I don’t come around the forum often bc it’s always been so difficult for my head and my balanca to read, but I do try on my good days to keep up with you all… I’ve mostly been focusing on a low A diet for almost 1 year now. Some original symptoms have slowly improved (with lots of set backs and flares along the way), my dizzyness and balance being one of them… I seem to be able to manage things/flares pretty good at this point, but my standards have continued to get lower, and I feel I will never be the same again, who knows anymore? I continue to have some minor gum flares every so often, a forehead rash that keeps flaring (things like coconut oil, saurkraut, butter make it worse, so I don’t eat these things and try to mimimise other trigger foods), my skin is the worst it’s ever been at times, red and dry, though a few months ago it was looking quite good, tinnittus up and down, though I notice certain foods can still make my ears worse, like coffee, coconut water, celery, possibly… I have also been wondering if foods higher in B6 in general make me feel worse, I still don’t know, but suspect I’ve made myself toxic with B6 too. In Janurary I started getting B12 shots once a week for around 10 weeks, when I saw that my B12 was once again under 200. And ever since my shots I’ve had progression nerve pain in my mid section and groin area, especially my groin area, like a live wire on each side. A few days ago I had a massive flare again, but this time affecting my lower back nerves/muscles, and the nerve pain in my groin is through the roof, I can hardly walk or bend, I even get “shocked” when I’m sleeping or just try to walk… I have never experinced this sort of pain in my life so I find it frightening… whenever I’ve had an “A” flare or dump, it’s often felt familiar, like “here we go again, but I know it’ll shift soon”… with this I can’t tell what I need to do. The doctor’s all think I’m crazy at this point. Has anyone here had anything similiar happen to them? Could it be nerves waking up from B12 shots? The doctor said this is not possible to me. Could it be kidney related, the lower back? Oxalate related? Or simply another extreme A dump? I’d like to know what I can do to help ease these symptoms, because not being able to walk is making no sense to me at this point in the diet… I’ve only been using Magnesium spray so far……. thank you, if you have read this far 🙂 Sending best wishes to all of you
Dude we don't know anything about you and your issues and this post didn't help with that at all. What is your history of health issues, what was you diet like and what is your diet now, what stuff did you take etc.. We need to see things in context. To figure out what can be your main issue. If it is some toxicity, deficiency etc..
Could I suggest a bit more empathy for people who are suffering. Sometimes comments that are designed I’m sure to be helpful come across as a little harsh. Or maybe that’s just my interpretation?
Hi @audrey
I’m sorry you’re in such rough shape right now. Sounds awful. ☹️
If I were you I’d look into thiamin deficiency, as that can cause neuropathy. Vitamin A detox uses up thiamin, so it is a deficiency a lot of people run into it seems.
Here’s Dr. Lonsdale on how to test for thiamin deficiency (basically, the serum B1 test won’t necessarily identify it):
https://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/
And here’s a YouTube video about thiamin deficiency as it relates to neurological dysfunction (Elliot Overton has a lot of good videos about vitamin B1):
Some lower-oxalate food sources of vitamin B1 are:
- 1 cup of lentils = 28% DV of B1 (there’s lots of molybdenum in there, too, which helps the detox system also)
- 1/2 cup sunflower seeds = 86% DV of B1
Dr. Lonsdale recommends taking magnesium along with B1, so you’re already set there. He usually recommends this form of thiamin: https://www.lifeextension.com/vitamins-supplements/item26106/allithiamine
Here is his post about the forms of thiamin:
https://www.hormonesmatter.com/navigating-thiamine-supplements/
Thiamin is essential for me at this point in the detox. I feel horrible if I don’t take it (I eat the lentils and sunflower seeds every day, along with megadosing thiamin HCL).
Have you read any of the posts here about the bean cure, and are you incorporating legumes into your diet at all? The soluble fibre is important because it’s what grabs onto the vitamin A in the bowels and removes it.
Well, I hope you get to the bottom of what’s going on, and that you feel better soon Audrey.
Hi @audrey, I hope you feel better soon.
I think @puddleduck is right about the possibility of thiamine deficiency. I take lipophilic thiamine regularly. All my life I walked around with a crown of mosquitoes over my head, a sign of thiamine deficiency. This symptom only disappeared after two years of intense thiamine supplementation.
But it came back yesterday, when I was in the throes of Vitamin A detox! Which tends to prove that the detox process does use up a lot of thiamine.
I wish you a better time soon. Hugs.
Quote from Jiří on April 27, 2020, 1:28 amDude we don't know anything about you and your issues and this post didn't help with that at all. What is your history of health issues, what was you diet like and what is your diet now, what stuff did you take etc.. We need to see things in context. To figure out what can be your main issue. If it is some toxicity, deficiency etc..
I understand and appreciate your bluntness. My issues began 2.5 years ago after, what seemed like, a toxic does of CBD oil… I’d been using CBD for years at that point on a somewhat regular basis, and eating a diet very high in vitamin A (raw dairy, liver, eggs, carrots daily) when I started developing awful neck pain, which I thought was just due to sleeping wrong, arm numbness and swollen lymph nodes along my neck and collarbone. I was tested for various things and discovered nothing… so decided to up my CBD doseage, which, to put a long story short, put me into something that felt like going into shock, twice… and ever since I’ve been experiencing 24/7 dizziness, imbalance, feeling like I am on a boat, severe panic attacks after every meal (this was the first shit to disappear) and almost every other symptom of vitamin A toxicity that I’ve read about. Before I started a low A diet I had noticed that eating extra coconut oil made my dizziness temporarily disappear, which I now attribute to the coconut oil just pushing vitamin A into my fat cells. This was 2.5 years ago, and in the last a couple of months, after being on this diet for 11-12 months, my head is feeling a lot better, hardly perfect (7/10), but I’ve adapted a lot and know how to get through the awful cycles better now. My complaints at this point are mostly irritations, with a panic attack being rare unless I’m “dumping” which seems to get more and more manageable the longer I’m on this diet. What is new is this debilitating nerve pain. My diet consists of, beef, brown rice, potatoes, mushrooms, celery, cucumber peeled, courgette peeled, bananas, olive oil, salt, sunflower butter, raisens, leek, sometimes chicken, sometimes oatmeal, pineapple, apples, peers, chickpeas occasionally, black beans and white beans, asaparagus, white cabbage, tuna from a can (when desperate.) I’m probably forgetting some things. My occasional cheat foods these days are a tiny bit of tomato, like ketchup, chocolate again, roasted tahini, and also newly added is a bit of bread and reishi mushroom, after a long break (which I’ve already stopped taking 4 days ago.) These cheat foods I’ve only been eating off and on for 3 months. I also have a long history of dark chocolate abuse, and have gone for very long periods without it over the years. I hope this information provides more clarity.
@puddleduck thank you so much for your reply. This is definitely something I will be looking into... I do eat lentils but not that often.
Quote from Ourania on April 27, 2020, 4:32 amHi @audrey, I hope you feel better soon.
I think @puddleduck is right about the possibility of thiamine deficiency. I take lipophilic thiamine regularly. All my life I walked around with a crown of mosquitoes over my head, a sign of thiamine deficiency. This symptom only disappeared after two years of intense thiamine supplementation.
But it came back yesterday, when I was in the throes of Vitamin A detox! Which tends to prove that the detox process does use up a lot of thiamine.
I wish you a better time soon. Hugs.
Thank you!
Hi Audrey
I'm sorry things are so difficult for you right now. It is hard when everything is such a struggle and you can't see a clear way forward.
Your talk of being "shocked" jogged my memory. I don't know if it's the same thing but some others have experienced what they have described as electric shock sensations. Here are a couple of threads where is mentioned in case it is helpful to you:
https://ggenereux.blog/discussion/topic/electrical-feeling/
https://ggenereux.blog/discussion/topic/my-nightmare-and-my-recovery/
Like Puddleduck I have found thiamine supplementation to be necessary and think that soluble fibre (beans or a supplemental form) is an important thing to include if you can as is big part of getting toxins out of your body. Go slow though as it can prompt a bit of a toxin release.
All the best.