Quote from Beata on March 27, 2022, 5:29 am

@jaj, thank you. This sounds really interesting and I need to research it further.

Quote from Rachel on March 27, 2022, 9:05 am

Three year mark:

My diet has changed very little though not by choice.  I would love to eat a more varied diet.  I’m no longer able to eat much in the way of soluble fibre.  I haven’t tried beans in a while.  Oats are fine with my gut but stimulate detox symptoms if eaten too regularly which is a shame as the beans and oats keep my bowels moving nicely and I miss them. 

Eyes:  my dry eye is mostly improved but returns when I am either pushing the detox too hard (food or supplements) or hit some other problem.  My vision continues to deteriorate.  It’s not bad by many people’s standards but it is not typical for me. 

CFS:  Some improvement but still pretty limited.  I saw improvement in 2021 especially during the latter half of the year but I have gone backwards a little this year.  It is still better than when I started low VA .  My energy is more reliable and I generally need fewer naps during the day.  I can go out for coffee most days (I don’t but I am able to) and am able to do more short walks.  I managed nearly a mile at the beginning of the year but haven’t been able to repeat that.  Still I am able to walk more than previously and at a better pace.  I can manage more around the house and garden.  Things that I could only do on “good” days I can now do routinely.  I can do more things in a day.  In the past if I did one thing that I knew was energy depleting, I would have to rest the remainder of the day.  Now I can usually do 2 – 3 such things during a day. 

This is good progress compared to how I was at the beginning but still very limited compared to most people.  I can’t go out for the day.
I am able to visit my mum more often (this involves multiple nights away from home) and need little recovery time once home.  I do tend to need more naps whilst I’m away but I am able to do more when away – go out for coffee versus stay in and chat. 

POTS:  In abeyance provided I keep up the salt intake. 

Haemochromatosis:  No significant change.  I’m recovering from venesections quicker than I did 3 years ago but no change during the last 3 years.  It’s difficult to assess the rate at which I am loading with iron as this has never settled down to a reliable pattern. 

Autism:  I hadn’t talked about this before.  There is a real difference in my difficulties when I am suffering more pronounced detox symptoms.  I think many people would say this whether autistic or not but it is very clear.  It takes a lot of energy and concentration for me to cope with various sensitivities and to translate neuro-typical speech and actions into neuro diverse speech and actions and when I am struggling with detox I do not have enough resources to go around.  For example for me to be in a group and following conversation, working out when it is my turn to speak so that I am not constantly interrupting, working out if someone is joking or being serious, translating it mentally in to language that makes sense to me, battling against the back ground noises and smells, filtering what I’m saying so that my bluntness doesn’t offend etc is mentally demanding and if my cognition is hampered and / or I am otherwise stressed my ability to do these things plummets.  I am much more easily overwhelmed and have frequent meltdowns.  I withdraw into myself and need to spend lots of times in my own hobbies / interests to decompress and recover and just give my brain a rest.  In general I am doing much better in this regard (excluding current situation) and am able to think around my autism better (I don’t know how else to describe it).  I am doing better managing my stress.  Anxiety is a major problem for me.  Much of this is due to being autistic but it also sky rockets with detox.  I have largely stayed away from this forum and Garrett Smiths for the last couple of years because reading about the current world situation was triggering major stress responses.

I was feeling really positive coming into this year but things have gone rather pear shaped since. 

Things I tried last year (2021): 

Probiotics:  I tried various probiotics according to Dr Smith’s theories but it wasn’t successful.  I wasn’t able to work out which ones if any suited me and in any case was never able to take more than a tiny amount.  The stress and negative effects on my gut led me to stop and leave well alone.

Lactoferrin:  I am pretty sensitive to this but persevered with tiny doses.  I do believe the lactoferrin is beneficial and I’ve seen the best gains after introducing it.  I’ve been able to slowly build up to 33 – 50 mg a day but it seems to be doing something positive.  I have recently stopped it for a while due to the “things going pear shaped” and the need to put the brakes on and regroup.

Transdermal minerals:  Due to my struggles with oral supplementation I decided to try some transdermal Selenium and Molybdenum.  I had been advised to supplement these minerals by Dr Smith in 2020 but was never able to introduce them orally.  It’s too time consuming and stressful to work on more than one thing at a time orally and I worried that I was becoming increasingly deficient in them.  It’s expensive but I decided to go ahead.  I was able to introduce these with no problems.  How much I’m actually absorbing remains to be seen. 

This year: 

I reached a plateau with the lactoferrin late last year and decided to take a break from efforts to increase it.  I changed little during Dec 21 to give myself a bit of a break.  I kept on with the dose of lactoferrin I was at (50mg) which felt stable.   

I decided to have another attempt to introduce some zinc.  This is another mineral Dr Smith advised me to take.  I was only mildly deficient in 2020 but again I worried that the deficiency was worsening.  I used a liquid Zinc Chloride because it was available in low doses.  I started at a single drop (0.4 mg) and gradually increased it to 8 drops a day. 
I have tried zinc several times in the past and reacted horribly to it.  I get very emotional, easily stressed and basically feel like an angry raging lunatic with crying spells etc.  I’m all over the place and can’t cope with how it makes me feel.

This brings me to the “everything going pear shaped”.  I had a general feeling of less energy this year but it was gradual and didn’t get my attention until I started exploding emotionally and going to pieces.  (Poor awareness is an unfortunate aspect of autism.  Something has to be screaming at me for it to register which is not particularly helpful!).  In the last couple of weeks or so I noticed a weird feeling around my stomach and just above it.  It felt like something was stuck in my throat low down.  I have had feelings like this before when I tried lowing my B1.  Once before I had what felt like low thiamine symptoms even though I was supplementing and based on something I read but can no longer remember tried supplementing B2 which solved the problem.  I remembered this and tried some B2 again.  This solved the gut / throat symptoms but provoked the anxious, exploding, crying , raging lunatic. 

I am speculating that I was getting a bottleneck in my detox pathways through lack of usable B1 or B2 and taking the B2 cleared that causing a release of too many toxins. 

Alongside this has been a deterioration in my vison.  I’ve been aware of this for many months but it has escalated this year with increased dryness and blurring.  They feel red although they are not and the skin under my eyes feels delicate. 

Since then I have been back peddling trying to get myself stable again.  I stopped the lactoferrin and zinc for a week and then restarted on a lower dose but this was still too much and I have stopped them altogether now.  I am not taking B2 every day since this provokes the anxiety and emotional response.  I am taking it on the days I take the B1. 

I think there has been more than one thing going on.  I think I was low in B2 and this possibly affects my ability to utilise B1. 

I think it is likely other deficiencies exist that are causing my eye problems.  I’m ordering a B complex to try. 

I suspect I have copper problems and taking the zinc has exposed it.  This is probably another thing that creeped up on me but that I didn’t recognise until it got really bad. 

I’ve been getting more intermittent head pains.  Not headaches but periodic sharper pains.  This is not that unusual but tends to be a sign that pushing things too fast. 

I have gone from feeling positive a  the end of last year to feeling overwhelmed and frustrated this year.  It’s the same frustration - I have a high toxic burden but tolerate very little that would help remove them.  My gut is a major problem severely limits what I can do to help my situation.
I seem to settle down when I don’t mess with supplements or my diet but everything moves so slowly that I’ll be pushing up daisy’s before I progress enough to significantly improve my health and quality of life if I stick to diet only.  Also I think I am running into micronutrient deficiencies which can’t go on.  It is really limiting having beef and potatoes 3 meals a day.  I have hungry days and have nothing quick and easy to eat.  It’s a pain when going out.  There is very little food I can just grab and go. 

I really need to make some progress with my gut but have no idea how to achieve this.  I was hoping the lactoferrin would help but I can’t take much of it.

It’s puzzling why I could manage beans and oats in large quantities in the beginning but not now.  My theory is that something was blocked meaning that I didn’t react to the soluble fibre with increased bile but now that blockage is gone and I no longer tolerate the resulting bile release. 

Re charcoal – I have used this in the past but I can’t use it consistently or in large quantities due to its constipating effect.  I do use it on occasion as a one off when I’ve overdone things and it does help reduce detox symptoms especially headaches if I catch them early enough.  I will take a look at bentonite clay – thanks puddleduck. 

The consult I had with Dr Smith in 2020 indicated that I needed Selenium, Molybdenum and Zinc but the deficiencies were relatively mild.  I didn’t do follow up tests since I was unable to act on the results.  I am about to do some more tests to see how things have changed.  I want to keep an eye on my Se and Mo levels.  It will be interesting to see how my Zn levels have changed.  I eat a lot of meat and should be getting a fair amount that way.  It’s strange that a small amount of supplemental Zn causes such a reaction given how much I am getting in my diet. 

I have wondered if ZnCl is better absorbed than other forms of zinc.  We know that MgCl is well absorbed and we get our sodium from NaCl.  I’ve been wondering if the Chloride salts are particularly well absorbed.

I haven’t had any oral supplements today and am consequently feeling a little less fragile which is a good.

I will be looking at the suggesting and ideas people have had and think about what to do.  I really appreciate the kind words and support.  Thank you 🙂 

 

Quote from puddleduck on March 27, 2022, 3:04 pm

Thank you for the detailed update, @rachel! 😃

It's good to see you have had some small but solid improvements in the severity of your CFS. I do relate to your awareness difficulties with autism and know what you mean by "think around" it. That's the perfect description!  😂 For me, sluggish detox definitely causes irritability and increases my sensory sensitivity in a big way. I appreciate your sharing about how it affects you and the changes you observe.

When charcoal was constipating for me, I used cheap magnesium oxide and psyllium along with it. That might not be at all helpful with your gut situation, though...

It'll be interesting to see how your mineral levels are when you test them! It seems like a good sign they weren't too badly deficient in 2020. Despite your significant gut symptoms, you seem to be absorbing well at least? Your experiences with lactoferrin and probiotics sound intense...

Best of luck trying the B complex! It makes sense you might be in need of all of them together.

I know copper dumping is brutal... Inositol is one thing I used/use to protect the body during copper dumps, but it is a sugar and perhaps would trigger your gut.

It's good taking a supplement break gives you some relief. Hoping there's some piece for you to find that'll make this detox a little less overwhelming and slow for ya. Rooting for you!

Quote from Andrew B on December 22, 2022, 7:40 am

@rachel it seems to me that with all the years vegan/vegetarian might have led to low choline. The beef has helped a lot but probably not enough to cope with detox. Anxiety and stress tend to reduce choline. Pushing the detox with zinc is really bad for you which suggests leakiness not fixed (yet) by lactoferrin. Choline again would help the leakiness and improve absorption which appears another problem. Eggs for choline if tolerated.

Quote from Rachel on December 22, 2022, 8:30 am

Thanks for the input Andrew.  I don't tolerate eggs (or didn't last time I tried).  I'm really backed into a corner with my diet and it has gotten worse over recent weeks.  I tried a fast in the summer and although that went well in terms of coping with it, my gut seems to have become even more sensitive following it.  I did it in the hope that giving my gut a complete rest was one thing I hadn't tried but it seems to have backfired.
My diet is pretty much beef, potatoes, banana with chicken once a week and a little lettuce and parsnip.  Even with that I now get problems with bloating and have pretty much daily low grade pain in my lower gut. 

I really don't know what to try.  I feel conflicted regarding choline as opinion seems to be very divided and I haven't sat down and gone through it all.  To be honest, at the moment my goal is no longer to detox vit A but to fix my gut.  I certainly don't want to load up on vit A but my gut is my priority.  Anything else can wait until that is in a healthier state.
I haven't taken lactoferrin for nearly a year now.  Maybe it is something I should try again.

I'm trying to do regular exercises throughout the day to stimulate good vagal tone in the hope that that might improve matters for me.  Get me into parasympathetic mode more of the time.
As far as diet and supplements go I'm pretty much backed into a corner and haven't a clue how to get myself out of it.  I just know that doing more of the same isn't going to do it or it would have happened by now.  I need to change tack.  This is why I'm focusing on stress and vagal tone at the moment. 
I feel that I am constantly on the cusp of a detox reaction, that my system is maxed out in that repect.  It doesn't take much at all for me to develop a headache and that is my classic detox reaction.  Breathing exercises, soluble fibre, vitamins, any stressor you can think of basically ..... all cause headaches.
The ray of hope is that despite my gut going from bad to even worse, I am still seeing slow improvements in my energy. 
I can't make sense out of my situation or figure out why the things that others find helpful only seem to cause negative reactions in me.
Any ideas are welcome and I appreciate you taking the time to read my account.

Quote from Andrew B on December 22, 2022, 8:43 am

@rachel I would see whether you could tolerate egg yolks or egg whites as either of these two might help. Slowing down the detox helps but you would be limited to switching from beef to more chicken. Perhaps more carbs. 

All the real liver detox experts know choline helps liver detox but it also has other benefits re parasympathetic activity which the eggs really helped for me. Choline also helps gut health. Sunflower seed 'milk' is another way to boost B1 which might help vagal tone.

Some people use sunflower lecithin powder which enables you to set the dose very low. That's another option if you cant get enough choline from food. Possible you are not absorbing enough choline from the beef. 

The strong detox has damaged your gut and the leakiness has caused problems. Therefore, I try to slow detox right down and then replenish choline to fix the leakiness.

Going to bed early or switching lights off 1,2 or 3 hours before bed is another stress reducing strategy I use especially in winter.

Quote from Audrey on December 22, 2022, 8:50 am

@rachel I am really sorry to hear you are still struggling, I can relate to this feeling of being backed into a corner and feel super disheartened after over 3 1/2 years on this diet. I am really giving the choline a try now by eating one egg a day, but even that can push things too hard (dizziness/anxiety) but I DO feel my liver improving (twinges and pains are much less noticeable) and I want to keep going slowly with it. I wish I had something positive to offer you. I wonder if cutting back on eating meat could help you? I notice I tolerate meat less and less and feel better with less, maybe bc it stops the detox? I'm also on the spectrum.

Quote from Orion on December 22, 2022, 9:00 am

Four years of low VA, coupled with doing lots of beans in the last 6 months of the journey caused what I believe Andrew is describing, worsen digestive health, sort of like being on accutane and stripping the intestinal path causing leakiness.   I also had major issues with parboiled rice, I don't think I was cooking it long enough, which led to lots of bloating and generally not feeling like I was digesting things properly.   Removing the beans and parboiled rice weeks back are helping along with eggs shifting things back to a positive feeling.

I added in 2 eggs, small amount of quinoa(20g) in my white rice, small slice of rye sour dough each day this wee.  Will try to remember to post here how it is going.  Also taking small amount of sunflower lecithin sprinkle on the rice/quinoa, maybe 1/8 teaspoon to start.

I hope you are able to turn things around, starting low and slow is always best.

Quote from Jenny on December 22, 2022, 9:13 am

@rachel

Hi Rachel, I’m so sorry to hear you are struggling. I feel exactly the same. 

This detox can be dangerous for some people imo if not properly supported and/or done too quickly.

I agree with Andrew’s opinion on choline and I think this is one way that I’ve become damaged. Choline deficiency ruins cell membranes.

The other aspect I’ve looked at is induced secondary porphyria, a heme pathway disorder. I’ve done a thread about this somewhere. This is induced by a toxic overload on the body - a fast detox is a toxic overload - in genetically vulnerable people (20% of population according to Steven Rochlitz). It makes people super sensitive to food and supplements. Steven Rochlitz suggests a rotation diet and testing all foods and supplements with a kinesiologist. If people have the same foods over and over again he says they will become sensitive to these too and rotation is the on,y way. Idk. He has written several books. Dr Klinghart says that treating pyroluria improves porphyria. 

I’m in such a sensitive state that my life has become extremely difficult and I have also decided to address by calming the nervous system. Being stuck in the sympathetic stressed state stops the body healing. I’m currently doing Alex Howard’s 12 week reset for what he calls the ‘maladaptive stress response’. I’m also doing some other therapies to address balance in the body and energy. 

The prolonged vA detox has messed me up big time. I have to remind myself that I’ve cured a number of issues too. However, if I could rewind time I would do the detox very differently and I would not take what ‘others’ have to say on foods and supplements to be the correct path. I would read the 62 year old man study and think carefully about it. 

Edit: porphyria is induced by many foods but MSG, nightshades and citrus are some of the worse, along with stress and alcohol. MSG and free glutamate in food is a deep rabbit hole I’ve been down. It’s become a huge seizure inducing issue for me so I’ve had to learn a lot about that. Russell Blaylock’s book - excitoxins, the taste that kills - is a jaw dropping read.