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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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Hope you don't mind me posting here - could use some help!

Messages
2
Hello

I don't normally post to fora because I'm severely autistic and I usually end up getting banned within a week, but I'm beyond desperate now - and the NHS is beyond USELESS!

I hope you don't mind this post, as I've never been officially diagnosed with CFS/CPS/ME/fibro/lupus - or any other condition this forum covers, but I've so many similar symptoms, that there might be SOMEONE who can help me - I'm WAY BEYOND DESPERATE NOW!

I've always been a believer in holistic cures, and won't go near mainstream 'medicine' if I can POSSIBLY help it. Knowing what I know about the NHS now, I see it as nothing more than the UK sales and distribution arm of Big Pharma - it's NOT concerned with HEALTH AT ALL!

10 years ago, I was morbidly obese and type 2 (I have PCOS). I got all the usual BS from the NHS (and, had I known it was BS at the time, I may not be up shit creek now!). I was ordered to follow a VERY low-fat diet, and do all that chronic cardio BS (because 'calories in/calories out', y'know…).

The net result was that I ballooned from 24 stone to 30. Of course, it was MY fault, I wasn't following the diet properly, I was still eating too much fat, I wasn't exercising enough, yadda, yadda, yadda…

So, I did my own research (being high-functioning autistic has its benefits sometimes!) and found the NHS was telling me BS (and probably KNEW it was telling me BS, too…).

So, I switched to a LCHF Palaeo diet - and lost 23 stone within 3 years and, for a while, I felt FANTASTIC!

I cut out ALL grains, ate plenty of grass-fed butter, lard, EVCO, EVOO, pastured red meat (when I could afford it - I'm on disability benefits), offal, pastured eggs, and I did eat non-cow dairy (goats', sheep's and buffalo). I was very strict, cutting my carbs down to <30g/day in the weight-loss phase, and using intermittent fasting, MCT oil, strong black coffee and moderate fasted cardio to help accelerate my loss.

For 6 years, I felt fantastic; then, about 3-4 years ago, I started having problems with maintaining energy after eating. I was subsequently diagnosed with gallstones (unsurprising, considering how obese I'd been) - and then, of course, I came up against NHS BS once again. Now, I know that most of you MUST know the sole function of your gallbladder is to aid in the metabolism and digestion of dietary fats, right…? It OUGHT to in constant use because fat should be your primary fuel source (this is WHY this country has a weight problem - humans aren't meant to shovel vast quantities of carbs down their necks; I view obesity as a food intolerance because it's caused by eating an incorrect diet - one that goes against our evolutionary blueprint. Next time someone espouses the benefits of whole grains, think on this: - if humans were meant to eat grains, then WHY would ANYONE suffer from coeliac disease…? Logical, right…? If grains were supposed to be consumed in any quantity by us, then we'd ALL be able to tolerate them. The fact that some people can't to a greater extent means that we ALL can't to a lesser extent).

Okay, gallbladders. The analogy I like to use is to liken it to a car's petrol tank; what happens if you put petrol in your car, and then don't drive it for ages…?! What happens to that fuel…? Goes all sludgy and causes engine problems, right…? So it is with your gallbladder; if you adhere to a LFHC diet, as the NHS claims is healthy, then your gallbladder is not going to be doing much - and neither is your bile. So, how can gallstones be caused by using your gallbladder properly…? Keep the bile moving, just like you keep the petrol in your car moving by driving it, and the bile can't solidify, can it…? How can preventing the gallbladder from doing its job be a good idea…?! Sadly, this logic is wasted on the NHS, which is why I've washed my hands of it.

There are other reasons, too, notably my thyroid. I believe I've been suffering from thyroid issues for about as long as I have gallbladder issues, but numptie here went AGAINST her gut instinct (you'd have thought she'd have known better, wouldn't ya…?!) and BELIEVED her quack when she continually told her that all her bloods showed her thyroid was functioning optimally (do you KNOW how impossibly HARD it is for me to deal with quacks…?! I can't talk to 'em - it's like my larynx shuts down - so I have to be pretty desperate to go ANYWHERE near one. Add my complete lack of social skills to that and you can, I hope, begin to understand my problem).

I have since learnt that the blood test for thyroid issues is BS. It's based upon the ranges presented by people with thyroid issues (logical - you won't have your thyroid checked if it's not causing probs, will you…?) - so how can a 'normal range' be anything BUT abnormal…?!

So that's me and the NHS - I've done with it. I'm flying this ship solo now - and I feel like I'm in the middle of the south seas in a tempest, and I've completely lost control of the ship. To put it bluntly, I feel like shite.

I've ZERO energy
My body feels like it's made of lead
I'm suffering fibro-like musculoskeletal pain
I'm losing my hair Big Time
I've severe GI issues (my IBS, which going Palaeo sorted, is back - and it's EVIL! I've always had C more than D - and now I'm almost permanently C! I've also an EXTREMELY swollen and distended belly)
'Hyper-spasmodic' colon (and eating makes THAT worse too).
Insomnia
Inability to derive energy from my food (and my diet is shit now; I'm almost back to eating LFHC again - and that makes me VERY uncomfortable). Gone are the days I only needed to eat a single VHF meal per day/24hrs), so I'm CONSTANTLY HUNGRY (and, when you can't eat the LCHF diet you're used to eating, and you've got PCOS, then your mind turns to gaining weight again…).
Feeling thirsty - without actually BEING thirsty.
Depression (and I've NEVER been depressed in my life)
Nausea (whether I eat - or not)
Skin probs (but ONLY on the right side of my body - limited to my right arm, really. Dry skin (psoriasis?) on my elbow, back of my hand and, recently ( within the last 3-4 weeks) a VERY itchy patch on my right palm.
Periods more irregular than usual (and VERY heavy. TOTM also exacerbates everything else).

I have 4 goals (and they're not very big - none involve leaving the house, because I can't do that at the mo - I'm bedridden!)

1. Having enough energy to have a proper shower and wash my hair (not been able to do so since the beginning of January)

2. Having enough energy to be able to listen to online radio for longer than 15-30 mins at a time

3. Being able to get back to eating LCHF Palaeo again (I don't know what you know about autism, but we HATE being unable to do what we know is 'safe')

4. Actually, I lied. This one DOES involve leaving the house because I've not been able to in 3.5 YEARS! I HATE being cooped up; I may not be very good around people, but I know of places I can go to be outside and not have to have contact with anyone.

Okay, here's my supplement list. This is what I need help with most, as I need to start getting better like NOW! I'm EXTREMELY FRUSTRATED now (well you would be too if all you can do all day is lie in bed!).

B100 complex (1 a day)
Vitamin C (10g in 2l water)
Vitamin D (50,000IU once a week)
mB12 (10mg daily)
Vitamin K2 (500mcg daily)
CoQ10 (300mg daily)
P-5-P (300mg daily)
Zinc (60mg x 2 daily)
Selenium (up to 1.2g daily)
Iodine (KI - this is what I most need help with; I've got a bottle of Iodoral 12.5mg (all I could get) and, for the past 3 days I've been taking 400mg (32 tabs daily) alongside 1,200mg selenium (selenomethionine). I believe getting THIS right is the key to solving EVERYTHING - would I be correct in that assumption…?)
Fe (NOW Foods iron complex - 27mg iron. 1 tab daily)
I've bought some manganese (14mg tabs) thinking the iron might be depleting my Mn levels (I know too much is a Bad Thing, but you do need SOME).

EAAs (no idea on weights, unless specified, as all the pouches came with one of those ubiquitous 5ml blue scoops that appear to accompany bulk EAA pouches)

ALCAR (1 scoop daily)
Taurine (1 scoop daily)
Tyrosine (1 scoop daily)
DL-phenylalanine (1 scoop daily)
Lysine (1 scoop daily)
Tryptophan (200mg daily)
Theanine (200mg daily)

Not EAAs, but: -

TMG powder (1 scoop daily)
Choline bitartrate (1 scoop daily)

I have spent literally HUNDREDS attempting to get this right, and NOTHING seems to be working. Like I said earlier, I'm on ESA/DLA, so simply DON'T have money to chuck away. Most of the frustration stems from the fact that I can't see an end to this - and I NEED hope. I need someone to tell me WHERE I'm going wrong, what I need to change, if there's anything I'm missing - but SPELL IT OUT! I may SEEM to have braincells but, when it comes to things like this I'm pretty stupid. Tell me WHAT to DO, WHAT to TAKE (and HOW MUCH), and WHEN to DO/TAKE IT.

If there's anything I've missed/you need to know, TELL ME - I just want to start getting better soon. I also want to start growing MJ to help with my autism - and my general health - but I'm in NO FIT STATE to even THINK of that now…


I've had 2 'not bad' days but today I'm back feeling like total shite again. Haven't been able to stop crying all morning - and it's not even TOTM (period finished about a week/10 days ago.

I apologise for the choice language, but I'm autistic and I'm stressed. I'm scrabbling around in the dark, looking for a light switch all the time attempting to avoid being devoured by a Grue - or something from the Dungeon Dimensions.

It's robbed me of EVERY little pleasure I had in life (which weren't many). Just feel I'm lying in bed awaiting Death (and I can't play chess either, so cheating ain't an option*).

*If you're not a Discworld nut, these jokes won't make any sense. It IS possible to cheat Death by playing him at chess - he can never remember which way the horsey moves.

Sorry, for my own amusement really. I DESPERATELY WANT to clean up my diet again, but that's not possible until food stops wiping me out.

Yes, we have some holistic practitioners in the UK, but I'm disabled and have hardly any spare money (hence the MJ - I'm saving up for that because it'll be cheaper than seeing a holistic therapist). I also live in the SE of England where, if you're not worth squillions, you may as well not exist. I'm stuck with my folks who, although they CLAIM they wish to help me, will only do so if I "conform to the NHS" ("If the NHS is good enough for everyone else, then it's good enough for you! What makes YOU so special that you have to be different from the rest of us…?!" Well, for a START, mother dearest, I LIKE my body; I'll only ever have the one, and I rather fancy NOT filling it full of toxins, if that's all the same to you…. They also fail to understand the difference between true wellness and merely being 'un-sick'. They believe themselves to be healthy; Dad's on 80mg Lipitor, omeprazole, propranolol, amoxicillin - and now the quack wants him on metformin, too. Mum isn't taking anything at the mo, but she IS overweight (adhering to a LFHC diet of course - she's lost 2lb in 6 months. Contrast that to when I was VLCHF to lose weight; I lost 2 STONE (28lb) in 6 months. Okay, I was fatter than she is, but LFHC isn't natural - and it's unsustainable).

My dad lost one of his best friends 3 years ago; he was relatively healthy, until he was put on Lipitor at 58. Then he developed diabetes, CHD (yep - one thing a quack WON'T tell you is that statins CAUSE CHD because high cholesterol is - 99% of the time - caused by elevated HDL cholesterol so, by lowering overall, you're lowering HDL - and increasing CHD risk). I have a VERY deep-rooted mistrust of mainstream 'medicine'; it's NOT about health (why would Big Pharma want you well…?! Well people are bad for business, right…?!).

3 years ago, at the age of 73, my dad's best mate Martyn dropped dead. I mean LITERALLY dropped dead. And I use 'literally' in the literal sense. His death certificate claimed 'liver failure due to type 2 diabetes' but he didn't HAVE diabetes prior to being stuck in Lipitor. He didn't really have ANYTHING, aside from all the usual 'side-effects' of a LFHC diet. He went from zero to around FORTY tabs a day (excluding any supplements he may have been taking). Dad and I don't really have much of a relationship, but I don't want him to end up dead too - and he's almost on the same combo as Martyn was. But he's his father's son and he refuses to listen (my grandpa was the most irascible, stubborn, obnoxious, obstreperous old bastard you'd ever meet. Dad's pretty much the same).

Even if I DIDN'T mistrust the NHS, dealing with it would be impossible as my autism is so severe I can't talk to ANYONE - and I mean LITERALLY talk, it's like my larynx packs up. I also suffer debilitating panic attacks and end up sectioned (the quack wanted to give me a script for 4mg risperidone - how about "NO!"…?! NOW do you understand WHY I need the MJ…? But that's got me into mass arguments with the folks. It's ILLEGAL, and "We're good people, we don't break the law". Funny idea of "good" if you ask me, upholding a law which doesn't nothing but criminalise decent people, and turns addicts into criminals by forcing them to cheat, steal even murder to get their fixes. Upholding a law like that to me is an unconscionable act, and I hope that I've stumbled across a forum full of like-minded folk.

Lots of things make me pissed - but none more so than the NHS and the Misuse of Drugs Act (Americans wiki it - it's accurate. It's the most evil, statistic, fascist, sadistic and reprehensible piece of legislation on the UK statue books. Our govt are STILL claiming that it cuts crime (yeah cos making shit illegal doesn't turn law-abiding citizens into criminals, does it…?!).

I've just had mother complaining about the state of my room again. See what I mean about them not actually giving a shit about ME…?!

Okay, I need to rest now (yep, writing this has wiped me out - and it's taken several DAYS to write).

Today's challenge WAS to attempt a shower but, as I've just had to crawl to the bog, that ain't gonna happen.

Big hugs all,

AN X❤️X
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
hi :)

I've got some short, sweet suggestions:
  • stop trying to educate the NHS. We know they have it wrong, stop wasting your energy on them. Join us in educating ourselves.
  • all your supplements, we have to make sure you indeed take up those nutriënts... reading your symptoms I fear you are not. Back to square one then: eat the right stuff and aid your body in the uptake. (your offal-diet sounds delicious! Homo Optimum by dr Kwasniewski? although 30 grams of carbs is the amount your brain does need so <30 grams is not something I'd do)
  • aid your gallbladder my acidifying your stomach (take HCL or diluted vinegar). A great way to detox some of the nasties that linger around in your system and give you trouble. Another way to aid your body to get rid is stretching. As in yawn and stretch. Nothing major or tiring. You really are back to square one and need to take things slowly. Build up from the start (again). You can do that! You've done it before.
  • take a horizontal rest 45 minutes after you've eaten. Digesting is hard work and when your stomach starts emtpying about 45 minutes after your meal, your body can use all the energy it needs.
  • have some nice technical reads over at Hyperlipid, he promotes ketogenic diets and pricks holes in scientific research. I'm sure you'll like it!
  • reconsider your mB12 intake. This is potent stuff, it's like taking kerosine to a diesel engine. It messes with neurotransmitters and might well cause the depression you're experiencing. Do you know for a fact that you don't process regular B12?
  • be content with doing one thing a day. Getting out of bed. Or getting dressed. Or taking that shower (but no soap or washing hair or even standing up, just drag a plastic chair and sit. Or just sit on the floor.). Take an hour lie down after your shower. It sounds like your adrenals are exhausted. Bann all stress out of your life. Which brings me back to my first suggestion: aim your thoughts and energy at something interesting, not at something that will have you grit your teeth.
take it for what it's worth, I'm just someone on the internet ;)
But I wish you well.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi - I agree with WoolPippi 100% bit tired after reading your post so that's all I can say for now except to bang on my usual drum about selenium toxicity - please be careful. and Iodine and MB12 sound like way too much dosage wise.

Sorry you are going through this - it sucks I know.
 

tdog333

Senior Member
Messages
171
Justy is right about the selenium, if that's the synthetic form you're doing yourself more harm than good. Look up Selenium Cruciferate, or some natural form of selenium(from yeast, mustard greens, broccoli,etc)

All that Iodine is going to support your thyroid which will in turn tax your adrenals. They work on an inverse relationship. I'd be careful with that.

If you're taking that much MB12 with no methylfolate you are going to get some bad effects. You need Methylfolate to get your methylation cycle going.

In simple terms-
Without methylfolate the cobalamin stays in "phase 1" which is highly reactive and can bind to vitamins, when you have Methylfolate it can change to its "phase 3" form and be used properly by the body without any reactive damage.
 

adreno

PR activist
Messages
4,841
Rather than strict paleo, I would look into the Perfect Health Diet:

http://perfecthealthdiet.com/the-diet/

It is basically paleo, but with "safe" starches - you really need those starches, both for your energy and for fermentable fiber to feed your gut microbiome. Basically on a LC diet you are starving your gut flora to death, and this will have serious consequenses for your health. The ketones produced on a LC diet also feed yeast.
 
Messages
2
Whilst I appreciate your reply, it's virtually IMPOSSIBLE to OD on B12; it's a water-soluble vitamin (like all B vitamins, though there's a fat-soluble form of B1 (thiamine), which is known as 'sulbutriamine'). It's no more possible to OD on B vitamins as it is vitamin C, so taking more than your body requires simply means you excrete the excess. You can see this when you pee after taking B2 (riboflavin) - it'll be bright yellowy-orange.

Please read http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency for more info. If you don't know Chris, you should, his is the first website I read for health info. I've just ordered his book 'Your Personal Palaeo Code' (it seems to be VERY hard to obtain in the UK).

Secondly, whilst I realise the brain requires some carb, do you need to obtain it via diet…? No, you don't. Y'see, your body has a mechanism by which it can synthesise carb from protein; this mechanism is known as 'gluconeogenesis', and it's also the process responsible for converting your own muscle tissue to carb to provide energy if you're engaging in chronic cardio (as the NHS decrees you must) this is WHY, as you'll all be aware, the phrase 'fat-burning exercise' is oxymoronic.

There are tribes which DON'T eat anywhere NEAR 30g carb a day, and they're the healthiest on Earth (the Inuit, for example; yes, they'll get trace carbs from the herbivores they eat, and the reindeer milk they drink, but there ain't much vegetation in the High Arctic, is there…? Humans would have a hard time digesting the lichen reindeer live on). Bottom line is, dietary carbs aren't necessary.

I don't mean to sound condescending (and, if I do, I apologise, it's the autism) but your advice, whilst well-intentioned, is erroneous. Before I became ill, I'd pretty much read everything out there on LCHF palaeo, so I know about that which I speak.

Here are some more URLs you might like to check out: -

Http://www.dietdoctor.com/FAQ
Http://www.marksdailyapple.com


Those are the other two, along with Chris Kresser's, that I read on an almost-daily basis.

Thank you for your reply, though, it's appreciated… X❤️X
 

SOC

Senior Member
Messages
7,849
@Athene Noctua,
You may not be aware that most people with ME/CFS struggle with some form of "brain fog". Most people don't know that. :) Among the things many struggle with is reading and responding to large amounts of text.

In your original post, you raised a number of different topics that are likely to generate lively discussion. However, many members will have a hard time reading and responding to them because of the length of the post and the mix of topics. If you split the topics into several separate posts, possibly even in different subforums as appropriate, I'll bet you'll get more response and conversation. :)

If you would like to do that, but have difficulty figuring out how, let us know and perhaps one of our less cognitively-challenged members could help you divide your post and place the topics in appropriate subforums.
 

adreno

PR activist
Messages
4,841
Those are the other two, along with Chris Kresser's, that I read on an almost-daily basis.
Well, if you really read Chris Kresser, you would know that he is a big fan of the Perfect Health Diet. Here is a video where Chris actually recommends starches:


But anyways, you seem to have all the answers, so good luck to you.
 
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peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I have a method of making showering and washing hair easier.

I have a small plastic step-stool in the bath, stabilised on a rubber mat. I sit on that to have my shower.

To do my hair, which is long, I comb it all forwards, upside down.

I sit on the stool, with my head forward, prop my head on one hand, which I prop on my elbow to support the weight and wet my hair, using the shower head.

Then I take a bit of shampoo and sort of wipe it across the back of my head, then gradually work it forwards to get it through my hair - without tangling it.

I can do this with my head dropped forwards, and both my elbows propped on my knees, so it's not so much work raising your arms.
Once the shampoo is through it, I just coil the lot on top of my head and leave it sitting there while I wash the rest of myself.

Then I rinse the shampoo out, keeping all the hair untangled, and apply a bit more shampoo, again gently, not working it in massively, the first "soak" in shampoo does get most of the dirt - (I only manage this once a week).

Then I apply the conditioner and comb that through and rinse it.

It makes a huge difference not having to stand up while in the shower - and a huge difference to the time and effort of getting it untangled.

The only danger comes if you soap your bum then sit down again before rinsing it.
 

tdog333

Senior Member
Messages
171
You can't overdose on b12, but it can cause problems.
When mb12 loses its methyl group(or never gets one) it becomes highly reactive and can cause problems if not methylated again (by methylfolate) quickly. It can deplete other things like vitamins and minerals if this doesn't happen.



Watch the next 2 minutes of this from 14:39 for a better explanation:

Or if you want the scientific version it's talked about at the bottom of page 2:
http://www.utdallas.edu/~mxa049000/lessons/research/literature/Autism/new/deth autism methyl hypoth 09.pdf
 

adreno

PR activist
Messages
4,841
You can't overdose on b12, but it can cause problems.
When mb12 loses its methyl group(or never gets one) it becomes highly reactive and can cause problems if not methylated again (by methylfolate) quickly. It can deplete other things like vitamins and minerals if this doesn't happen.
Do you have any idea of a ratio between the two (I think Lynch uses 1000mcg B12 for every 800mcg folate)? And should they be taken at the same time of day?
 
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tdog333

Senior Member
Messages
171
I don't know a precise ratio of Methylfolate to MethylB12 but I know they should be close. Ben's supplement has 1000 B12 to 800 folate. From all of the case studies I've read, best results seem to be from taking methylfolate on an empty stomach 30min-1 hour before MethylB12 split into a couple doses throughout the day.
 

caledonia

Senior Member
My suggestion would be to not do or buy anything quite yet. You can make yourself worse just willy nilly popping supplements without knowing what you're doing. Some of the amounts are quite high...

As you are autistic, plus all the other symptoms you have, it sounds like it falls within the realm of methylation problems. Study up on methylation treatment and see if that makes sense to you. I have many useful and informative links in my signature.

Then if you think that sounds like you, start with a 4R Gut Rebuilding Program, before getting into methylation proper. If you have SHMT or ACAT mutations (sometimes called the "leaky gut genes"), you may also want to supplement for those while working on the Gut Program.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi Athene. I have Aspergers too and sometimes get banned from forums as I can be too outspoken with it (its hard to shut up if there is an issue), fortunately I havent been banned from here.

I didnt manage to get throu your whole post (too long for many of us with ME to be able to focus on to the level needed to understand) so will try to read the rest another time if I remember as I would really like to read all you said. (I know you wrote long posts due to Aspergers as I do too, I suggest to maybe next time make 2 posts on your thread instead of putting it into just the one..so we can read, stop break/brain rest, then read the second). From the bit I did manage to get throu, a couple of things stood out to me which you may not have realised.

Firstly those who have Autism/Aspergers, there does seen to be a ME/CFS connection with that going by what Ive seen at this website .. many on this site who have ME/CFS do have Autistic children and a few of us have Aspergers ourselves (thou maybe not more then is the norm, but I do think there may be a higher then norm rate of us having autistic kids hence I think there may be some link).

Be aware that with Autism often comes many other problems which are things also seen in ME/CFS... for example.. those who Autism are more likely to have food issues..allergies and intollerences, IBS, many have sleep issues, sound sensitivity is common in both disorders and fatigue is also common in Aspergers/autism... so it would be quite possible for someone with autism to be misdiagnosed with "CFS" as there is a lot of symptoms which can actually be connected to a persons Aspergers. So take care that doesnt happen to you.

Your PCOS.. with that the diet you should of been put on from the start should of been a low carb diet. The reason for this is that PCOS people get insulin resistance (hyperinsulinemia) and diabetes. 90% of PCOS people by the age of 40 have insulin resistance so should be on low carb diets!!

Hyperinsulinemia (prediabetes).. 95% of doctors do not realise that this causes a group of people with this severe issues, most doctors are soo naive about this condition. My allergist is a leader in that field (hyperinsulinemia), the dietitan which works in his clinic, she like myself and has a body which can hardly tollerate carbs at all.

He's seen many patients who get very bad issues from having high insulin or abnormally high insulin spikes. Some have gone to him in a wheelchair due to being so badly affected! In my case, i have too much insulin and it almost sends me crazy and I become violent and end up hitting people. If I breach very extremely low carb diet (diabetic diets are too high in carbs for me), it also gives me more sore throats (so must affect my immune system) fatigue (makes it very hard for me to get up out of bed in the mornings), more sleep issues.. and goodness knows what else..

So I think its quite likely your current condition is due to these other things you have. You say you dont eat red meat much due to finances.. Protein is extremely important if you have hyperinsulinemia which you are bound to probably have. Protein helps keep insulin from suddenly spiking so much and my specialists due to this told me I have to eat something no carb and protein eg fish, meat or eggs with EVERY MEAL. Fat can be important with an insulin issue eg Ive been told by my specialists not to buy skim milk as the fat in the milk.. helps slow down absorption of the carb (I think that was it.. anyway.. one with this issue needs to be buying full cream milk and avoiding skim!). Having a carb issue will also cause weight gain and the only way to loose is be cutting the carbs down.

My current diet due to this issue is so so strict (as I said, diabetic diets in my case are no good as they have too many carbs for me).

Anyway.. get a doctor to give you a 2hr glucose tollerance test WITH THE INSULIN RESULTS INCLUDED (that often actually needs to be requested or its left out). (unfortunately these tests arent always done right as your blood sample should be transported to the lab on dry ice and not all do that which then interferes with test result but get a test anyway as it still is likely to show up an issue in your case. I had to have my test done twice as my first came back normal but fortunately my specialists were familiar enough with disorder to be sure I had it so had me retested).

Hyperinsulinemia has been called the"Pandora's Box" of illnesses, by some specialists as it can cause so many different issues.

Anyway.. here's my specialists webpages on this. I strongly suggest you check them out, with your PCOS.. you need to know this info and it could be the cause of all your issues http://www.agale.com.au/IR.htm
 
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WoolPippi

Senior Member
Messages
556
Location
Netherlands
B12 vs mB12
you're not taking B12 you are taking mB12. You have bypassed the body's gate minder who decides how much B12 to use and discard the rest. mB12 is the activated form, it's rocket fuel.
mB12 messes with brain chemistry, especially in autistic people. I myself loose serotonin over it, for example. And it wires me hot and causes even more insomnia.

Taking mB12
Supplementing mB12 requires a lot of surrounding scaffolding and a firm base of knowledge to start from (such as wether or not your methylation cycle works properly. Knowledge can be obtained by getting your DNA checked (23andme.com) or getting the functionality checked (methylation panel from ELN lab))
If your methylation cycle works you don't need mB12. Regular B12 will work just fine.

30 grams of carbs.
let's not squabble, I know a lot about blood and brain sugar. I know the info you mention. I hope you looked at the ones I mention: Kwasniewski; hyperlipid. Also Bernstein for blood sugar/insulin. You know protein raises insulin, yes? As do portions of food bigger than your fist. No carbs needed for that reaction.

You'll see we are talking about the same thing. We agree. It's just that you take things into extreme, (perhaps because of autism? I have the same tendency, because of INFJ and Asperger's) and 30 grams of carbs is not evil compared to 15 grams or zero grams. It's all a low number: it's never a slice of bread. It's the difference between no/three leafs of lettuce. That really doesn't matter.

Theory vs practice
In the end all we read is theory and you/we have to figure out how our specific body functions in practically (I mean to say "the reverse of theory" but English is not my first language and I am tired so I fail. Hope you can guess what I mean to say)
In reality your specific body may work different than overall theories suggests. Mine does. We need to experiment with our individual black boxes and figure out what's true in practicality.
 

peggy-sue

Senior Member
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Hi again!

I'm sorry, I forgot to say welcome!

And I forgot to say congratulations on having managed to loose so much weight - that is absolutely brilliant.:thumbsup:

(I have a very one-track brain.)