Is 3 times enough? And inherit.

[MrJustatip]

I've been si M,W & F for couple months now and beginning to think it's not enough. Not sure if this happens to anyone else, but I get very tired, and weak until I eat something. It's a night and day difference after I eat, then a few hours later that all repeats. Do you all think I may need to increase more B12 si? Also. I'm a vet trying to get VA disability from my military service where the base I served on was contaminated with forever chemicals and they are telling me that PA is inherited so therefore those chemicals surely couldn't have caused PA. Opinions? Thanks, MJat.

[Jillymo]

With regard to your ongoing lethargy it may be worth trying more frequent injections to see if they help. It is still 'very early days' if you have only been injecting for a couple of months. Many on here myself included find they need to inject daily.

With regard to your other query of contamination albeit it a relatively old study you might find this of interest............

ncbi.nlm.nih.gov/pmc/articl...

medlineplus.gov/ency/articl...

Do you know what chemicals you were exposed to ? If you do google them and investigate what damage these substances could have caused you.........

Nitrous oxide use can cause vitamin B12 deficiency, resulting in neurologic manifestations such as myeloneuropathy and subacute combined degeneration of the spinal cord.9 Jul 2020

At a guess I would say your theory as to cause is highly likely. 🤔

[MrJustatip in reply to Jillymo]

Thank you Jillymo, I'm gonna do some research from those links you supplied. Thanks again, MJat.

[Jillymo]

I was searching for another forum member and came across this which might be of interest.......

Reactive gastropathy is the long-term process of a mucosal injury caused by chronic exposure to irritating substances. These substances produce a chemical reaction that erodes your stomach lining over time, which is why reactive gastropathy is also called chemical gastropathy. 2 Feb 2023

Have you been screened for gastric mucosa or inflammation ?

[Sleepybunny]

"but I get very tired, and weak until I eat something"

Just wondered if you'd had recent thyroid and diabetes tests.

[MrJustatip in reply to Sleepybunny]

No cent on tests for thyroid or diabetes, but previously in 2011 they said I might be hypothyroid, but then a second opinion Dr. said all I had was water sacks ion my thyroid and that I was otherwise ok on that front, as for the diabetes I had never been diag as diabetic, of course not tested recently for either. Thanks, MJat.

[am111]

Many times it is the frequency and consistence that matters not the amount. You can do daily injections but even halve the dosage OR do every other day injections. You have a gap of 3 days in one of your injections while the other two are at 2 days. You should make it even and that will help I believe.

[WIZARD6787]

I currently inject 2 mg 4 hours apart +-.

I injected 1.5 mg every day for 1 year 5 months and did improve. I bought into it takes a unknown time if ever and that is the way it has to be. Which seems to be true with current treatment understanding including minimally improving on the EOD protocol.

I see no rational reason to not do a trial of EOD and establish what the improvement or lack of improvement is. EOD is .182 grams per year at 1 mg EOD.

With my current understanding I would inject .50 mg per day as a starting point. I would also inject prior to bedtime as it seems to me that my body can best use B12 injections to heal during sleep. If it interfered with my sleep I would assume that was from healing and design accordingly. If I felt as wonderful as I wanted or thought I could experience I would simply inject less or less often.

For 5 months I generally increased to 4 injections during wakeful hours.

I then hypothesized that an injection is only effective for improvement for 4 to 6 hours and and started to get up in the night to inject.

The only regret I have which I am currently grieving is it took me so long to effectively self treat.

Note: It was not easy and sometimes disruptive to experience my neurosurgical system healing. It is not an inject more or more often and instantly feel better and everything is wonderful thing.

There is much conjecture as to why people inject more/more often. It is an unknown and not important to my design of trials to try. There is also the aspect that we all decide what is good enough just as we all decide what is possible. Unless we establish this by trials.

I am also B6 deficient and experience peripheral nephropathy if I do not supplement 50 mg of P-5-P twice a day. Which is the upper limit I use based on my research. I do not miss the pain.

[Narwhal10]

Hi MrJustatip,

So, you are injecting Every Other Day - Monday, Wednesday or Friday.

Now, you mention getting very tired and weak which resolves with food. However, you do not give further information as to whether you eat 3 meals a day with 2 snacks or anything.

Please note that my grandmother and many family members are very regimented with this approach. Breakfast, 11 o’clock tea with biscuit, 1 p.m. light lunch, 3 p.m. tea with a little snack, dinner at 6 p.m. A little something around 8.30 p.m.

Can you see the big problem with this ? Often I would be told, You will not want you dinner because I dared to eat a banana or a chicken breast at 4.30 p.m. or whatever time I needed to eat.

Some people find that eating 5 - 6 small highly nutritious meals a day works for them. Other healthy individuals find intermittent fasting works for them. I do not advise the latter one because P.A. originates in the gut and has neurological involvement. Therefore, people with P.A./B12 can have impairment of the Migrating Motor Complex (it triggers the wave of contractions in the gastrointestinal tract) and because B12 is required for the outer covering of nerves, the Vagus Nerve may be effected. This is a massive nerve that starts in the brain and wanders through several organs and the digestive system.

If people started learning a tiny bit of anatomy, they can understand their own individual symptoms. Likewise, listening to our own bodies, we will start understanding them more. You will find that meals are often mandated by a clock and others in our family unit or social circle. Pavlov did some great work on salivating dogs.

With regarding to triggers for PA, it is multifaceted. I strongly believe that looking for root cause is on a par of looking for the Holy Grail. Instead of concentrating on the why you have a disease, acceptance of living with it and how you are going to recover and manage it.

Autoimmune diseases have a genetic component and require a ‘trigger’.

I do hope that you are able to organise VA disability. At first read, I thought you worked with animals then realised I had the wrong sort of vet. 😳

*Does a sporty 30 something with an athletic body have the same metabolic rate as a 70+ year old with arthritis who has a more sedentary life style ?

Best wishes.

🐳

[WIZARD6787 in reply to Narwhal10]

*Does a sporty 30 something with an athletic body have the same metabolic rate as a 70+ year old with arthritis who has a more sedentary life style ?

I call this homogenization of experience. I am 68 years old and still waiting to not enjoy a winter wonderland etc.

[MrJustatip in reply to Narwhal10]

Narwhal10, love what you say. It makes so much sense. It's funny, because every time I think I know a little about B12, someone on here shows me I know just that "a little". Anyway, I will research the Migrating Motor Complex as I know little about it. Meantime, I also love your Holy Grail reference as I'd previously thought there was an inherited aspect to PA, but from what I know it takes a trigger to start it. You mention a lot in your response and I'll dissect it (as much as I'm able, lol). Thanks, MJat.

[Narwhal10 in reply to MrJustatip]

Yes, PA is a massive subject area. Some of us can also have low or no stomach acid (hypochlorida or achlorhydria - medical speak). So, this is gastroenterology.

Then there is the ‘hunger hormone’ and ‘fullness or satiety hormone’ called ghrelin and leptin respectively. So, because it is hormones, it falls under endocrinology. Any wonder why doctors train for a long time ? They learn all this stuff but trying to explain it all to a patient in a 10 minute consultation is impossible.

As a patient, one poor doctor had to listen to me ‘blather’ on. Poor lamb did not like it because I knew more than them. They also failed to ask about my Continuous Professional Development. Plus, I am very fortunate that I live in an area with a very large Neurological Research Centre and attend their lectures. The work they produce is approximately 20 years ahead of Clinical Practice. I have always been a ‘Girlie Swot’. So, who is more up to date with Research - me or them ?

🤓

[Mixteca in reply to Narwhal10]

Which neuro centre is that?

[Narwhal10 in reply to Mixteca]

I tap into several - Bristol, Exeter, Oxford, Cardiff and Northumbria has a Brain Performance and Nutrition Research Centre. So, if you read the research coming from there or attend on-line events. Some also have recordings which are then emailed to me, if I cannot attend. It is just about keeping my ‘finger on the Pulse’. I do not mean the U.K. GP’s Journal which is definitely worth a read once in a while. 😉

[Mixteca in reply to Narwhal10]

Ahhh...you said research centre, not centres. I thought/hoped you might personally know a few of those researchers. Unable to research or attend/watch online videos, I'm very ill.

[Narwhal10 in reply to Mixteca]

Sorry to learn you are very poorly. Sending you a gently hug. I did not want to publicly disclose where I live. Hope that is understandable.

Hope you feel better soon.

😘

[Mixteca in reply to Narwhal10]

Totally understandable. If you know of any Neuromuscular Neurologists who do SFN biopsies (even better if they've a sub-speciality in dysautonomia) pls message me 🙏🏼

[Narwhal10 in reply to Mixteca]

Just to clarify small fibre neuropathy biopsies ? And oh Mixteca, dystautonomia 😞. Bless you. I will search and pm you. I cannot promise you, I will find anyone but I will try my best.

In my experience, I had to explain what Postural Orthostatic Tachycardia Syndrome was and how to test for it. I rarely let on that I look great in a pair of scrubs.

Sorry, MrJustatip for the tangent on your post.

[Mixteca in reply to Narwhal10]

Yes! And sorry to Mr Justatip for diverting comments elsewhere 😳

[MrJustatip in reply to Mixteca]

👍 You're all good. 😀

[MrJustatip in reply to Narwhal10]

No problem. I love all your posts.👍

[Mysteriillness in reply to Narwhal10]

Hello, are you saying people with PA shouldnt practice itermittent fasting ? I couldnt quite understand your response and the reasons why you shouldnt if thats what you said ? Please could you explain as Im thinking of incorporating this into my healthy eating plan I want to try

[Narwhal10 in reply to Mysteriillness]

Everybody is completely unique and can approach their own diet and lifestyle which they works for them.

Each of us have different signs, symptoms and severity of symptoms of P.A./B12D and co-morbid illnesses. Therefore, it is using common sense.

If you compare someone who has pins and needles and low energy to a person who has been or is bed-bound for months/a year, there is a vast difference. It is not a one size fits all. In the later case, there may be damage to the vagus nerve. In which the person may have slow-transit. This is diagnosed by a gastroenterologist.

My mantra and many other Health Professionals say, You know your body best. People often do not read my posts or replies properly, I use words such as ‘may, suggests, likelihoods, links, probable, multifaceted.’

So, if you fancy trying intermittent fasting then do.

[B12life]

what was your b12 before the first ever injection?

[MrJustatip in reply to B12life]

225, 302, and 299. I was told that I was still within the 200-900 safe range. I'm 70 now and I've since learned that for seniors over 60, the range should be 1000 or more. Thanks, MJat.

[B12life in reply to MrJustatip]

200-300 is VERY low.

I strongly recommend daily. It will take a long time 1-2 years to really get clos to recovery with daily.

Take a b multivitamins daily.

I was 190 and I tried spacing out the injections only to have the symptoms come back.

[B12life in reply to B12life]

I've had b12 deficiency simce 2015, finally diagnosed in 2020 but told I didn't need injections so I got supplies on my own and injected.

Now I am able to exercise.

[bookish]

PA may be inherited - it is familial - but it isn't always inherited. Do you have any in the family already? And to be honest, even if you do, the predisposition is likely epigenetic as with other autoimmunity, so some will have their polymorphisms expressed and some will not, due to triggers. We've got 6 known consecutive generations of PA or B12 D but not all family have either. The chemical exposure could have been your trigger (or one of them). Have a look at this from Datis Kharrazian, ncbi.nlm.nih.gov/pmc/articl... quote

'Therefore, toxic chemicals have the ability to alter epigenetic expressions, leading to immune dysregulation and development of autoimmunity.'

He also mentions chemical depletion of glutathione - I found that I had a glutathione-absent gene, and although there are other glutathione pathways, it probably hasn't helped.

His book 'Why Isn't My Brain Working?' is superb, as is his one on thyroid function.

As to the weakness and need for food, are you keeping an eye on iron and potassium etc as you treat the B12, as you need the cofactors to keep making nice healthy red blood cells. And blood sugar dysregulation is common - something the Brain book talks about a lot.

Best wishes

[Narwhal10 in reply to bookish]

Superb recommend bookish,

I love Datis Kharrazian‘s work. He uses case studies and also wrote Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A revolutionary breakthrough in understanding Hashimoto's disease and hypothyroidism.

P.A./B12 and Hashimoto's disease go hand in hand.

[bookish in reply to Narwhal10]

Great isn't he. His thyroid book was one of the first that I bought, after the much-missed Dr Peatfield's of course. And so true about the B12/thyroid connections. Dr Chandy (also much-missed) said that low B12 could affect pituitary myelin and therefore signalling, so could also be playing a part in central hypo and sometimes hyper, never mind thyroiditis affecting parietal cells, and the two being commonly co-occurring autoimmunes. All of the PA people in the family also had a thyroid disorder of varying type, and many who have B12D or who can't get any diagnosis re the B12 or have no 'apparent' B 12 issue do still have a thyroid problem. I'm the only one with vitiligo that we know of though.

[WiscGuy]

I agree with comments regarding eating schedule. If symptoms come and go with eating, experiment with different foods on varying schedules, eg, eating something every two hours, noting effects of different foods on abdominal pain/discomfort. Quite likely the GI symptoms are related to B12 issues (eg, search atrophic gastritis B12), but treatment of B12 is unlikely to have a dramatic effect on GI issues in the short term.

[Noelnoel]

Before changing injection intervals perhaps consider checking for diabetes and re-visiting the possibility of hypothyroidism or coukd it simply be diet-related?

Is your diet high in low GI foods? This causes glucose to spike and crash making you feel hungry more often because of sudden dips in blood glucose. If your diet has lots of flour-based carbs (bread, pasta), white rice, etc and not enough protein, changing that to include more protein and good carbs in the form of plenty of fruit and veg will keep you sated for longer and the hunger pangs will subside

You could try this for a month or so and if there’s no improvement it would be worth doing the aforementioned tests

If it’s not too personal a question, what was last night’s dinner? What have you eaten for breakfast?