when will I start feeling better? - Pernicious Anaemi...

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when will I start feeling better?

Bloggin profile image
15 Replies

hi all. Have been injecting daily with methylcobalamin for 2 months as well as taking liquid iron. I’ve heard people say it takes “a while “ to start feeling better, just wondering how long we are talking. I need my daily dizziness to go away or know if it’s not being caused by anemia. Thanks!

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Wwwdot profile image
Wwwdot

Hi Bloggin

I am not iron deficient but I do self inject B12 every other day for the last month. To be honest I have gone backwards to go forwards and generally marginal but important improvement on the whole.

My understanding is that the more deficient you were then the longer “a while” will be. I am in my second month now and looking back at my journal I can see I am on a slow improvement track.

Sorry I can’t be more help - others will respond shortly with better insights. All the very best.

Sunnysidoop profile image
Sunnysidoop

I'm at about 6 weeks of twice weekly Methylation SI and don't feel any better yet. I feel less able to focus and concentrate and more stressed

Wwwdot profile image
Wwwdot in reply to Sunnysidoop

That’s a difficult situation- do you know whether you have sufficient supporting vitamins to support the B12 healing? I am new to this but I know that sometimes B12 alone is not enough. I have made better progress with additional prescription vitamins than when I was just having B12 by itself.

I do hope you start to feel better soon.

Sunnysidoop profile image
Sunnysidoop in reply to Wwwdot

Thanks. That's great you're making progress. I need to start taking folate. I've got methylfolate to try as I've read folic acid blocks receptors of something (I have COMT and mthfr SNPs). I haven't rushed to take it as my folate was high when I had my last bloods taken (>20). I think I have other cofactors covered

Wwwdot profile image
Wwwdot in reply to Sunnysidoop

I was prescribed folic acid 5mg totake every other day within 6 hours of a B12 jab. I was never very good at biology or chemistry so find all these long scary 😧 looking tongue 😛 twisting words at a time when my mind is as woolly as a sheep 🐑 a big challenge!

What is the difference between methylfolate and folic acid? 🤔

What is COMT?

What is mthfr SNPs?

Sorry to ask further questions!

Thank you for replying

Technoid profile image
Technoid in reply to Wwwdot

Folic Acid is a synthetic form of folate. Methylfolate is an active form of folate - it is called methylfolate because it has whats called a"methyl group" (CH3) attached to the folate.

Information from MedLinePlus on COMT:

"The COMT gene provides instructions for making an enzyme called catechol-O-methyltransferase. Two versions of this enzyme are made from the gene. One form of the enzyme helps control the levels of certain hormones. The other form is used in the brain, where it helps break down certain chemical messengers called neurotransmitters. Catechol-O-methyltransferase helps maintain appropriate levels of these neurotransmitters in [part] of the brain.

ref : medlineplus.gov/genetics/ge...

There has been some research on COMT and folate here :

"COMT genotype, micronutrients in the folate metabolic pathway and breast cancer risk"

academic.oup.com/carcin/art...

There is a lot more information on COMT here (I have not validated it) : selfdecode.com/app/article/...?

Inf on MTHFR from CDC :

"The MTHFR gene provides instructions for your body to make the MTHFR protein, which helps your body process folate. "

"You might have read or heard that folic acid is not safe if you have one or two copies of the MTHFR C677T variant. This is not true. Even if you have one or two copies of the MTHFR C677T variant, your body can safely and effectively process all different types of folate, including folic acid."

from : cdc.gov/ncbddd/folicacid/mt...

Further, on MTHFR :

"Bottom line: Daily consumption of 400 μg of folic acid increases a woman's blood folate concentration to an adequate amount to help prevent a neural tube defect regardless of her MTHFR genotype (CC, CT, or TT)."

from medscape.com/viewarticle/92...

SNP is a Single Nucleotide Polymorphism.

From Medline Plus:

"Single nucleotide polymorphisms, frequently called SNPs (pronounced “snips”), are the most common type of genetic variation among people. Each SNP represents a difference in a single DNA building block, called a nucleotide. For example, a SNP may replace the nucleotide cytosine (C) with the nucleotide thymine (T) in a certain stretch of DNA.

SNPs occur normally throughout a person’s DNA. They occur almost once in every 1,000 nucleotides on average, which means there are roughly 4 to 5 million SNPs in a person's genome. These variations occur in many individuals; to be classified as a SNP, a variant is found in at least 1 percent of the population. Scientists have found more than 600 million SNPs in populations around the world."

medlineplus.gov/genetics/un...

Wwwdot profile image
Wwwdot in reply to Technoid

Thank you - I will take a while to digest this will need to read several times. Thank you for being so thorough with your reply.

Sleepybunny profile image
Sleepybunny

Hi,

It took me many weeks even months to start seeing obvious improvements but then I had been left untreated for many years.

Some people on the forum report that they respond better to a particular form of B12.

Have you looked into other forms such as hydroxycobalamin, cyanocobalamin, adenosylcobalamin?

Some forum members report deficiencies in folate, iron and Vit D as well as B12 so have you got blood test results for these?

MoKayD profile image
MoKayD

I felt worse when I took methylcobalamin. It seems this type of B12 adversely affects some people. Just for the heck of it, try cyanocobalamin for a week or two. You can get a prescription from your doctor or order it from Canada from a company called Biosense.

MoKayD profile image
MoKayD

Sorry, I forgot to add that I am here in the US also.

Arti094 profile image
Arti094

hello. I asked for advice earlier and this very kind forum and people helped me. I didn’t agree with methylcobalamin at all. I was terribly dizzy. I feel much better with hydroxocobalamin. Can you please see if you get better with a different type perhaps?

NanoNugget profile image
NanoNugget

Dizziness can also be caused by toxins in the system. If you have or suspect toxins try a very gentle cleanse. Mung beans are great for detox —soak mung beans for a few hours, drain off water, add nice organic vegetables and perhaps some barley grains and add enough water to cook it into a simple soup/stew. Avoid onions or garlic. You can use a bit of salt, coconut or olive oil, and a little lemon juice and ginger. Try eating this way along with salads and 100% whole-grain bread and absolutely no processed foods.

I also suffered from extreme dizziness due to toxins in my system and one point, I also had adrenal fatigue, which can cause dizziness. Dr. Wilson wrote a great book about this. My adrenal fatigue was so severe that I was in bed for eight months because my blood pressure was so low I could hardly stand up. By the way adrenal fatigue is not accepted widely by doctors, as a real condition. This is because there is no pill that will fix this—it requires a lifestyle change. It is caused by too much stress (also physical stress from surgeries, etc). Good luck!

Technoid profile image
Technoid in reply to NanoNugget

Garlic and Onions are awesome foods and very good for your health. The only reason to avoid them would be because of allergies, food intolerance or IBS like issues. Would skip the coconut oil - saturated fat. Great recipe otherwise.

Adrenal fatigue is generally not regarded as a real health condition : health.harvard.edu/blog/is-...

A cautionary tale : thecut.com/2022/09/what-is-... .

It's common to experience dizziness either during B12 deficiency or during treatment - I had quite bad new onset dizziness for 1-3 months after my injections started. It could be toxins but I don't think anyone really knows for sure what causes it. Likely it will recede with time and treatment. Make sure you're eating well in other respects too and supplementing if needed where levels are low.

NanoNugget profile image
NanoNugget in reply to Technoid

Actually coconut oil is not the ‘bad’ saturated fat as people have been led to believe by food companies. A campaign was launched years ago, in the 1950-60s, by MAJOR food corporations (not speaking about today’s smaller health food companies), to get people to eat margarine instead of butter. Coconut oil was targeted and portrayed as a bad fat —and people are still being misled. Let’s talk science. Coconut oil raises the HDL (good) cholesterol so it cannot be the cause of heart problems. It even lowers the bad (LDL) cholesterol! If you look at countries were coconut oil is eaten as the primary oil, heart disease is rare.

Check this link

healthline.com/health/high-...

Technoid profile image
Technoid in reply to NanoNugget

Lets talk science indeed :)

To back up your claim you've linked a blog from a company ("Essential Nectar" : essentialnectar.com/ ) that sells only Coconut Oil. It's more than a little bit ironic that you are claiming that food companies are trying to convince us that Coconut Oil is unhealthy but your source as evidence that Coconut Oil is healthy is... a company that sells Coconut Oil.

With regard to studies of countries where Coconut Oil is eaten and subsequent health outcomes, this is what's called ecological data and it is the lowest form of epidemiological evidence. There are so many of whats called "confounders" - differences between countries that have a much greater effect on health outcomes that this kind of claim is more or less meaningless. To understand this watch this video from 7:49 :

m.youtube.com/watch?v=nJPcL...

It's true that nutritionists in the past recommended that people switch out butter for margarine. This was before the dangers of trans fats, which were contained in margarines at that time, became better understood (in the 1990's). The story is explored in : health.harvard.edu/staying-.... All quotes below are from the referenced Harvard Medical School articles.

"In the early 1990s, Walter Willett, now chair of the HSPH Department of Nutrition, and others determined that trans fats—liquid vegetable oils transformed into shelf-stable solids (think Crisco)—were associated with greater risk of heart disease and are a double metabolic whammy, raising “bad” LDL and decreasing “good” HDL. Scientists around the world simultaneously showed that saturated fat—the kind in butter and lard—increases both “bad” LDL cholesterol and “good” HDL cholesterol, making it similar to carbohydrates overall but not as beneficial to health as polyunsaturated fats from nuts and vegetables."

"Today the butter-versus-margarine issue is really a false one. From the standpoint of heart disease, butter remains on the list of foods to use sparingly mostly because it is high in saturated fat. Margarines, though, aren't so easy to classify. The older stick margarines turned out to be clearly worse for you than butter. Some of the newer margarines that are low in saturated fat, high in unsaturated fat, and free of trans fats are fine as long as you don't use too much (they are still rich in calories)."

This article contains a great potted history of how advice on dietary fat developed over the years, and the issues around public messaging:

from hsph.harvard.edu/magazine/m...

However AFAIK trans fats have been phased out in most countries since 2006/2007 (ref : sciencedirect.com/topics/fo... ) and its now possible to get margarine-like spreads with low saturated fat and other beneficial ingredients such as plant sterols. I'm not the biggest fan of these spreads and from my point of view, a much better choice would be hummus or nut "butters/spreads". But the newer margarines described above would not be harmful in moderation if part of an overall healthy dietary pattern.

Lets see what the American Heart Association has to say about Saturated Fat and Coconut Oil:

"Researchers culled hundreds of research papers published since the 1950s, finding evidence supporting the AHA’s recommendation that saturated fat should make up less than 10 percent of daily calories for healthy Americans."

"People are also quick to believe trends that aren’t supported by science, he said. A prime example is coconut oil, widely touted for its health benefits. “I just don’t know” who is pushing it, but it’s not scientists, Sacks said. It may be driven by manufacturers looking to profit, or some countries’ economic dependence on coconut oil, he said.

According to the advisory, coconut oil is 82 percent saturated fat, and studies show it raises LDL “bad” cholesterol as much as butter, beef fat or palm oil."

Ref : heart.org/en/news/2018/05/0...

You're right to be wary of food companies promoting the health benefits of the products they sell.

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