Long COVID Treatment – Vitamin B12, Vitamin D and other vital nutrients

Long COVID and COVID Long Haulers

COVID has gripped many lives for more than a year now and in some countries, people with Long COVID are lucky enough to be treated with essential nutrients which the virus appears to deplete or to exacerbate a latent deficiency. 

So many are writing about this and I wanted to collect together some of these texts for those unaware of a potential way back to full health.

 

The UK

Unfortunately many people in the UK with Long COVID may only be accessing the following treatments: aspirin, steroids, antivirals, antibiotics, and anti inflammatories as detailed on the Patient info website.

This BBC news clip on the effects of #longCOVID (and the following two) feature: Dr Nathalie Mac Dermott, Louise Buxton and Sarah Wakefield, who may benefit from the information within this blog, so if you know them, please share.

You will see that the symptoms of B12 deficiency (and other nutrient deficiencies) and Long COVID very much overlap:

Long-term COVID-19 Symptoms in a Large Un-selected Population.

“The long-term symptoms most enriched in those with COVID-19 are anosmia, ageusia, difficulty concentrating, dyspnea, memory loss, confusion, headache, heart palpitations, chest pain, pain with deep breaths, dizziness, and tachycardia.” 

In my April blog it was also highlighted that B12 could be of help in treating COVID and since then more information has been gathered.

I hope the following offers an added pathway back to health for those experiencing the debilitating effects of Long COVID.

New to Vitamin B12 Deficiency?

If you read the following documents and feel that B12 deficiency could be affecting you, then if possible, please try not to supplement with B12 before testing. Then please see this crash course for more info on how to diagnose and treat B12 deficiency.

You may need B12 injections if you cannot absorb B12 from food and even very low dose B12 tablets can raise serum B12 levels to be ‘within range’ which may skew results and stop you accessing the treatment you need. Some countries allow purchase of injectable B12 from pharmacies but for those in countries like the UK that currently don’t allow this (which we want to change) then you may need a doctor to diagnose and then treat you with injections.

If you have already tried oral B12 supplements but your symptoms haven’t improved, make sure you ask for testing and let the doctor know to make sure the lab note that you have been taking B12. Do not wait to be clear of supplements for 4 months, there is absolutely no point in wasting time!

It’s key that your doctor understands that a within range result, coupled with symptoms should not be ignored as the clinical picture is of utmost importance. Make sure you get to see a copy of your results – you are legally entitled to them.

 

In the UK the NHS stated that Long COVID sufferers would be offered help at specialist centres:

Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.

Perhaps NHS England and Professor Chris Brightling would benefit from the information in this blog?


Hypotheses and articles on Long COVID treatment 

 

Sally Pacholok

Undiagnosed Cobalamin Deficiency in the Face of COVID-19:  An unrecognized Comorbidity and Silent killer.

“People with undiagnosed vitamin B12 deficiency may be at a higher risk of dying from COVID-19. Not only does low B12 suppress one’s immune system making it harder to fend off infection and produce antibodies, but B12 deficiency also causes hyperhomocysteinemia, which in turn can cause dangerous blood clots (i.e. deep vein thrombosis, pulmonary embolism, stroke, and myocardial infarction).”

Dr Albert Mir

Please see Dr Albert Mir’s Hypothesis Jan 2021 version –
COVID-19 and vitamin B12. An important warning for the population.                          

COVID-19’s toll on the elderly and those with diabetes mellitus – Is vitamin B12 deficiency an accomplice?

“…The question on hand thus lies on whether managing B12 deficiencies will impact COVID-19 fatality outcome or recovery rates. Herein, we review the latest evidence that shows that B12 deficiency associates in multiple areas very similar to where COVID-19 exerts its damaging effects: immunologically; microbiologically; haematologically; and through endothelial cell signalling—supporting the hypothesis that B12 deficiency is a potential modifiable risk factor in our fight against COVID-19.”

Be well: A potential role for Vitamin B in COVID-19

“There is a need to highlight the importance of vitamin B because it plays a pivotal role in cell functioning, energy metabolism, and proper immune function []. Vitamin B assists in proper activation of both the innate and adaptive immune responses, reduces pro-inflammatory cytokine levels, improves respiratory function, maintains endothelial integrity, prevents hypercoagulability and can reduce the length of stay in hospital [,]. Therefore, vitamin B status should be assessed in COVID-19 patients and vitamin B could be used as a non-pharmaceutical adjunct to current treatments.”

Vitamin b12 Deficiency in Covid-19 Recovered Patients: Case Report.

“The link between immunity and nourishment is clearly known and special attention is being given to its role in the COVID-19 disease Vitamin B12 is one of the dietary requirements necessary in the treatment of coronavirus patients Coronavirus patients often show clinical symptoms, such as fever, cough, respiratory distress syndrome, gastrointestinal infection, and fatigue It is sensible to suppose that COVID-19 affects cobalamin metabolism, impairs intestinal microbial proliferation, and contributes to symptoms of cobalamin deficiency Such an assumption is based on the fact that there are signs and symptoms of vitamin B12 deficiency that are similar to those of a coronavirus infection Based on these observations, it can be inferred that treatment with vitamin B12 can be useful in the recovery of COVID-19 patient.”       

A potential Role for Vitamin B in COVID-19.

“However, SARS-CoV-2 could interfere with vitamin B12 metabolism, thus impairing intestinal microbial proliferation. Given that, it is plausible that symptoms of vitamin B12 deficiency are close to COVID-19 infection such as elevated oxidative stress and lactate dehydrogenase, hyperhomocysteinemia, coagulation cascade activation, vasoconstriction and renal and pulmonary vasculopathy. In addition, B12 deficiency can result in disorders of the respiratory, gastrointestinal and central nervous systems. Surprisingly, a recent study showed that methylcobalamin supplements have the potential to reduce COVID-19-related organ damage and symptoms.”                                                                                                                                                      

ERYTHROCYTES AS A TARGET OF SARS COV-2 IN PATHOGENESIS OF COVID-19

“Hemolytic anemia in COVID-19, which develops at the first stage as a reaction to the SARS COV-2 viral microorganisms, causes cascading reactions to toxic erythropoietin and hemoglobin released from erythrocytes in the bloodstream, and then to hemosiderin released due to the death of erythrocytes in the tissue. The process ends with a decrease in the synthesis of erythropoietin in the decaying liver and kidneys, in the absence of the necessary vitamin B12 due to the pathology of its secretion in the gastrointestinal tract. The characteristic signs of damage to red blood cells in conditions of infection with COVID-19 indicate disruption of erythropoiesis, with developing iron deficiency and B12 anemia.”   

Homocysteine as a Potential Predictor of Cardiovascular Risk in Patients with COVID-19.

“Since the beginning of the novel coronavirus pandemic, the scientific community is in urgent need for reliable biomarkers related to disease progression, in order to early identify high risk patients. In fact, the rapid disease spread makes it necessary to divide patients in risk categories immediately after diagnosis, to ensure an optimal resource allocation. The identification of new biomarkers is strictly related to the understanding of viral pathogenetic mechanisms, as well as cellular and organ damage. Trustworthy biomarkers would be helpful for screening, clinical management and prevention of serious complications.” 

Can Vitamin B12 be an Adjuvant to COVID-19 treatment? 

“COVID-19 has  become an international pandemic and is causing a  worldwide public health emergency; therefore, an effective treatment is urgently needed. The hypothesis is that Covid virus interferes with the cobalamin metabolism, causing  symptoms  of cobalamin deficiency.  This is  plausible to  infer,  because there  are symptoms  of vitamin  B12 deficiency  that  are similar  to  those of  COVID-19. These symptoms  include increase oxidative  stress, homocysteine concentration, activation of the  coagulation  cascade, thrombocytopenia, elevated lactate  dehydrogenase  (LDH), low reticulocyte count, intravascular coagulation thrombosis, vasoconstriction, renal and pulmonary vasculopathies, which can result in respiratory, gastrointestinal and central nervous system  disorders.  Research  shows  that  high doses of methylcobalamin  is the  treatment for  symptoms  of vitamin  B12 deficiency.  Thus, an  additional hypothesis  is that treatment with vitamin B12, especially methylcobalamin, would reduce Covid’s damage to infected patients. Hence, in this  review  article  it  is  suggested  that  methylcobalamin  (vitamin  B12)  may  serve  as  an  attenuator  to  COVID-19symptoms. Clinical studies are required to confirm this hypothesis.”                                                                                              

COVID19, COBALAMIN / B12 AND SEPSIS: A LEFT OF FIELD SOLUTION

“High dose parenteral Cobalamin as prophylaxis and treatment for Covid19 and Sepsis/ARDS.”                                                                                                                                        

Homocysteine and the SARS-CoV-2 Coronavirus – The X Factor of Severe Disease and Death.

“Homocysteine (Hcy) is a natural, non-essential amino acid formed by the de-methylation of methionine. Pathologic elevations occur in many chronic conditions, particularly the cardiovascular conditions common with aging, and in SARS-Cov2. The most common co-existing morbidities, hypertension, cardiovascular disease, and diabetes are all strongly associated with elevated levels of Homocysteine.”
    

Vitamin C, D, Folate (B9), magnesium, zinc etc.

Jerome Burne’s blog 12 Dec 2020  Pressure rises for Vitamin supplements to protect against the virus.

“For almost a year now the government and the NHS have been studiously ignoring the possibility that a highly plausible way of effectively combating the virus would be to ensure that everyone, especially those most exposed to it, had adequate levels of the nutrients vital for a well-functioning immune system, such as Vitamin D, Vitamin C, zinc and selenium. Now suddenly three things that might just make a difference, have all happened at once…”

And the following papers:

Possible Treatments for Covid-19 or LongCovid.

Topic: Which vitamins, minerals, and health supplements might help people who have suffered from Covid-19 and its aftermath for too long?                       

SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS

“Abstract -A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”                                                           

The Role of Folic Acid in the Management of Respiratory Disease Caused by COVID-19.

“Entrance of coronavirus into cells happens through the spike proteins on the virus surface, for which the spike protein should be cleaved into S1 and S2 domains. This cleavage is mediated by furin, which can specifically cleave Arg-X-X-Arg sites of the substrates. Furin, a member of proprotein convertases family, is moved from the trans-Golgi network to the cell membrane and activates many precursor proteins. A number of pathological conditions such as atherosclerosis, cancer, and viral infectious diseases, are linked with the impaired activity of this enzyme. Despite the urgent need to control COVID-19, no approved treatment is currently known. Here, folic acid (folate), a water-soluble B vitamin, is introduced for the first time for the inhibition of furin activity. As such, folic acid, as a safe drug, may help to prevent or alleviate the respiratory involvement associated with COVID-19.”

Virtual Screening and Repurposing of FDA Approved Drugs Against COVID-19 Main Protease.

“The present study provided a comprehensive targeting of the first resolved COVID+19 structure of Mpro and found a suitable save drugs for repurposing against the viral Mpro. Ribavirin, telbivudine, vitamin B12 and nicotinamide can be combined and used for COVID treatment. This initiative relocates already marketed and approved safe drugs for potential use in COVID-treatment.”                                                                                                                                   

Clinical Trials are Proving that Vitamin D fights COVID-19 in Hospitals.    

Open Access Review Evidence Regarding Vitamin D and Risk of COVID-19 and Its Severity.

“Vitamin D deficiency co-exists in patients with COVID-19. At this time, dark skin color, increased age, the presence of pre-existing illnesses and vitamin D deficiency are features of severe COVID disease. Of these, only vitamin D deficiency is modifiable. Through its interactions with a multitude of cells, vitamin D may have several ways to reduce the risk of acute respiratory tract infections and COVID-19: reducing the survival and replication of viruses, reducing risk of inflammatory cytokine production, increasing angiotensin-converting enzyme 2 concentrations, and maintaining endothelial integrity. Fourteen observational studies offer evidence that serum 25-hydroxyvitamin D concentrations are inversely correlated with the incidence or severity of COVID-19. The evidence to date generally satisfies Hill’s criteria for causality in a biological system, namely, strength of association, consistency, temporality, biological gradient, plausibility (e.g., mechanisms), and coherence, although experimental verification is lacking. Thus, the evidence seems strong enough that people and physicians can use or recommend vitamin D supplements to prevent or treat COVID-19 in light of their safety and wide therapeutic window. In view of public health policy, however, results of large-scale vitamin D randomized controlled trials are required and are currently in progress.”                                                                  

Casting Sunlight on an Epidemic   Is vitamin D a critical host factor to prevent COVID-19?

“Some people will experience minimal effects from COVID-19 because their immune system can efficiently fight off the infection. The “host” factors that promote such a strong immune system were extensively studied before the age of antibiotics, and without an effective vaccine, they should be an important part of today’s response to the epidemic. Host factors that are often considered include vitamins (e.g., A and C), minerals (e.g., zinc and magnesium), and the omega-3 fatty acids. Of these, perhaps the most studied and most important host factor impacting survival from COVID-19 is vitamin D, created in skin from exposure to ultraviolet B radiation in sunlight.”                                                                              https://www.medpagetoday.com/infectiousdisease/covid19/85596

Vitamin D is the Solution to the Covid-19 Second Wave.

“What is causing the Second Wave? Vitamin D blood levels are seasonal; they rise and fall from one season to another. In summer, vitamin D levels are higher because people are out in the sunshine. When sunshine (specifically UV-B) strikes the skin, the body makes vitamin D. But as people spend more time indoors, in autumn and winter, vitamin D blood levels fall. The levels decrease from late September to October to November, and they reach their lowest extent in December through March.”                                                                               

Role of Vitamin D in Preventing of COVID-19 Infection, Progression and Severity.

“The outbreak of COVID-19 has created a global public health crisis. Little is known about the protective factors of this infection. Therefore, preventive health measures that can reduce the risk of infection, progression and severity are desperately needed. This review discussed the possible roles of  vitamin D in reducing the risk of COVID-19 and other acute respiratory tract infections and severity.”                                                                                    

Immune-boosting Role of Vitamins D, C, E, Zinc, Selenium and Omega-3 Fatty Acids: Could they Help Against COVID-19?

“Recent evidence has highlighted that nutritional supplementation could play a supportive role in COVID-19 patients. Administration of higher than recommended daily doses of nutrients such as vitamins D, C, E, Zinc and omega-3 fatty acids might have a beneficial effect, potentially reducing SARS-CoV-2 viral load and length of hospitalization . These nutrients are well-known for their antioxidant properties and immunomodulatory effects. Deficiencies in these nutrients can result in immune dysfunction, and increase susceptibility to pathological infection. In fact, dietary insufficiency of vitamins and minerals has been observed in high-risk groups of COVID-19 patients, such as the elderly, increasing the morbidity and risk of mortality  It is well known that the elderly are more likely to be nutrient deficient and to have compromised immunity via immuno-senescence, significantly increasing their risk of poor outcomes from COVID-19, and making adequate nutrition doubly important. The role of vitamins D, C, E, Zinc, selenium and omega-3 fatty acids in immunity, their status in patient infected by SARS-CoV-2 and their potential therapeutic role are discussed.”                                                                                                      

Nutrition, immunity and COVID-19.

“Vitamins B6 and B12 and folate all support the activity of natural killer cells and CD8+ cytotoxic T lymphocytes, effects which would be important in antiviral defence. Patients with vitamin B12 deficiency had low blood numbers of CD8+ T lymphocytes and low natural killer cell activity.”                                                                                                                                

Nutritional Status of Patients with COVID-19.

“Nutrients play a vital role in the defense against infectious diseases and the regulation of inflammation; however, little is known with regards to COVID-19.

We measured concentrations of vitamins B1, B6, B12, folate, vitamin D (25-hydroxyvitamin D), selenium, and zinc in 50 patients with COVID-19. Vitamin D deficiency was shown in 76% of patients and selenium deficiency in 42%. There was a significant difference compared to a control group of 150 people (vitamin D deficiency 43.3%). Among 12 patients with respiratory distress, 11 (91.7%) had one or more nutrient deficiency.”                                                                                                                                    

Combating COVID-19 and Building Immune Resilience: A Potential Role for Magnesium Nutrition? 

“In December 2019, the viral pandemic of respiratory illness caused by COVID-19 began sweeping its way across the globe. Several aspects of this infectious disease mimic metabolic events shown to occur during latent subclinical magnesium deficiency. Hypomagnesemia is a relatively common clinical occurrence that often goes unrecognized since magnesium levels are rarely monitored in the clinical setting. Magnesium is the second most abundant intracellular cation after potassium. It is involved in >600 enzymatic reactions in the body, including those contributing to the exaggerated immune and inflammatory responses exhibited by COVID-19 patients.”                          

A Cohort Study to Evaluate the Effect of Combination Vitamin D, Magnesium and Vitamin B12 (DMB) on Progression to Severe Outcome in Older COVID-19 Patients.

“Objective: To determine the clinical outcomes of older COVID-19 patients who received DMB compared to those who did not. We hypothesized that fewer patients administered 2DMB would require oxygen therapy and/or intensive care support than those who did not.”

____________________________________________________________________                                                                                                          

There are many more documents, papers and articles on nutrient deficiencies and COVID treatment and I hope this blog helps with your personal research and pathway to recovery.

I you wish to add any other articles to the comments please do, I would love to hear from you.

Kindness always

Tracey x

www.b12deficiency.info

Do you want to help make B12 injections available OTC from Pharmacies in the UK?

 

 

MHRA Double standards on vitamin B12 injections

So far, B12 injections can’t be bought from a pharmacy in the UK by the general public, but can be bought from a hair or beauty salon or any one of the 2500 technicians, clinics or outlets in the UK at a cost of between £25 – £100 each.

Isn’t this odd?- And some would say ridiculous or even immoral.

 

Following on from my previous blog regarding the B12 OTC Petition and the future Westminster Hall debate which my MP Jane Hunt will apply for – some of you kind people have asked your MP to join Jane and also make supporting speeches. Some MP’s have said, “I would need some compelling evidence to agree to do this.” – As if being restricted to just 4 lifesaving, cheap, injections a year isn’t compelling enough?

Well, the following information may help your MP to act – but if it doesn’t, then goodness knows what will and I suggest you get yourself a new one as soon as possible!

Find your MP here: FindYourMP and perhaps send this blog post to them?

Now here’s the funny bit

The MHRA in responding to our petition stated:

“……Vitamin B12 could not legally be classified as a medicine that can be made available for sale without prescription in pharmacies because it is an injection and because the condition it is licensed to treat, pernicious anaemia, needs a clinician  to diagnose it, and monitor its treatment (see point IV above). The same applies to insulin injections and to the diagnosis and monitoring of treatment of diabetes.
Vitamin B12 injection is currently licensed for use in maintenance therapy for pernicious anaemia every 2 – 3 months depending on the type of pernicious anaemia. Even if the product could be reclassified to make it available for sale in pharmacies, it could not be used more frequently than every 2 – 3 months, so reclassification to a Pharmacy medicine would not help those who require more frequent injections.”

and then they also state:

“Our current advice to private clinics administering vitamin B12 injections which are not licensed medicinal products intravenously for non-medicinal purposes is that we do not regard these to be medicines and that they fall outside of the remit of the MHRA. It must be absolutely clear in the advertising of such products that they do not have a medical purpose.”

So the same B12 (hydroxocobalamin in this case), from the very same manufacturers, is at the very same time;

A licensed medicinal product and also a non-medicinal product.

Mad, maddening and hilarious all at the same time isn’t it?

Slaps on the wrist

Some enterprising B12 injection providers have been telling the general public the truth, that B12 injections help boost immunity, that they combat fatigue and they may therefore help against COVID but the MHRA’s ludicrous rules around non-medicinal products which are also POM’s mean these statements do not comply and in fact telling the truth is a BIG FAT NO NO.

The MHRA have spent time during COVID alongside the ASA (Advertising Standards Agency) warning people who sell B12 injections direct to the public through beauty salons and the like – that they absolutely must not tell those they advertise to, what B12 injections will do or what they can help with.

12th June 2020

The MHRA allows clinics and individuals to market B12 injections by using the words ‘wellness’ or ‘boost’ or ‘supplement’ but not ‘deficiency’, they absolutely cannot be marketed with medical claims, and this is the bit that makes NO SENSE whatsoever, because we with B12 deficiency keep being told they are a ‘Prescription Only Medicine’!!!!!!

Please see below;

In May, the MHRA and the ASA published an Enforcement Notice which makes clear to businesses which offer vitamin shots the nature of the rulings and directs them to remove any COVID-19 related claims from their websites and social media pages. 

The following sets out and details these most recent regulatory developments:

  •  Prescription-only medicines (POMs) cannot be advertised to the public. 
  • Injectable vitamin D and injectable vitamin B12, specifically, are prescription-only medicines 
  • Advertisers must not, directly or indirectly, promote POMs to the public. Targeted enforcement, with the aid of monitoring technology, to find problem ads for removal and sanction came into effect on 12 June 2020. It also states this applies to ads for all “vitamin shot” products, not just vitamin D or vitamin B12. 
  • Action against direct and indirect claims that vitamin shots could help treat or prevent COVID-19

B12 Clinics

Like anything in this world there is good and not so good practice. Some clinics and individuals selling B12 injections direct to the public are stringently trained and follow their company’s guidance to the letter, keeping good records.

If they find a potential client is severely B12 deficient but has not been diagnosed and needs to be referred to a GP, they will explain this without skewing chances of diagnosis by not giving a B12 injection. Others won’t, they simply may not know that diagnosing B12 deficiency for the person is key to being able to access B12 from their GP as there is usually a lifelong need and having regular B12 injections from a private clinic would may not be financially sustainable.

A lifeline

These clinics and technicians provide an essential lifeline for so many who are dragging themselves around trying to survive on one injection every three months whilst trying to function, keep their mental health on track, look after a family, hold down a job and who may have had to home school on top of everything else during this years lockdowns.

They also provide a lifeline to the many patients who are B12 deficient but remain untreated due to a within range result on a serum B12 test. Too many GP’s do not understand the limitations of the test and that the clinical picture of B12 deficiency is of utmost importance. Some are unwilling to budge and allow treatment even when faced with a tearful patient on their knees begging for treatment.

Although my remit with my website is to keep people under the care of their GP when possible, I have referred people to the services of B12 clinics and technicians. This has occured when people are desperately ill and haven’t the strength or the inclination to battle with their GP for correct treatment. This has meant that these trusted sources can give the first injection and also teach the patient to self inject prior to purchasing their own supplies from pharmacies in other countries for around 60p per ampoule.

BREXIT

The awful truth is that the opportunity to buy from abroad has narrowed with BREXIT so now the situation is even more URGENT. We need B12 injections to be made available OTC from pharmacies in the UK so that when there is no help from the GP and where costly private injections are not an option, that people can access vital treatment.

Let’s not forget that the BSH sent out harmful Guidance stopping essential B12 injections which they then had to amend. Some GP’s Practices proudly report they are moving more and more patients onto tiny and useless 50mcg cyanocobalamin tablets unless they have a diagnosis of pernicious anaemia. This ludicrously harmful practice needs to be reversed. It needs to be shouted from the roof tops that PA is JUST ONE OF MANY CAUSES of B12 deficiency. It is NOT more serious than any other cause and apart from a deficiency caused by a proven dietary lack, treatment by injection is required for the swiftest recovery.

MHRA Threat to clinics

In communication with the MHRA, they also stated:

“However, we do have concerns about the level of clinical oversight present in IV vitamin therapy and injection services in general and the appropriacy of such services is currently under review.”

This ‘review’, if deciding on stopping treatment of B12 injections by clinics who do comply with the ridiculous rules of the MHRA, would not only negatively impact the companies and individuals who give B12 injections, but also to the people who rely on them to keep functioning both physically and mentally.

Don’t want to self inject?

There will always be people who do not wish to give themselves B12 injections and I for one hope that pharmacies would offer a service to people afraid of self administration.
Since embarking on the petition to make B12 OTC, some have commented that they fear that GP’s might stop giving B12 altogether if successful. I feel this fear is unfounded, doctors in countries who do allow OTC still prescribe and administer B12 injections to patients who need them. It would remain the responsibility of Primary Care to diagnose and treat B12 deficient patients but they would have to choose to.

Why do we need B12 to be made OTC?

Because so many people are restricted to just one lifesaving B12 injection once every three months. Some people say they can cope on this regime but many of us can’t, myself included. Each of us is differently affected and require a different frequency of B12 injections.

Whilst many GP’s will not treat patients according to individual need (or feel their hands are tied), then it is essential to allow patients the ability to look after themselves.

Please, if you feel strongly on this issue, ask your MP to get involved.

When rules are harmful, discriminating and ridiculous they need to be changed. Surely the MHRA can make vital lifesaving B12 injections available over the counter if they want to?

Wishing you the very best for 2021.

I hope that together we can reach this joint goal, along with freedom, togetherness and peace.

Tracey x
www.b12deficiency.info

 

 

 

Petition update – Your help is needed for the next stage!

Petition response

We’ve had a response to our petition from the Department of Health and unfortunately they have reported what we already know about the regulations for a POM (Prescription only medicine).

They state that we can’t have injectable B12 made available from pharmacies in the UK because of the Human Medicines Regulation 62 section 3.

Westminster Hall Debate

This doesn’t mean we give up. This means we keep on going and thankfully My MP, Jane Hunt is committed to helping and will be making an application for a debate on our petition in Westminster Hall. The focus of this will be that the MHRA allow B12 injections to be given as a boost via hair salons and clinics. More on this in the next blog.

Your MP can help

We need your MP to speak for you, alongside Jane when this happens.

Please ask your MP to come on board, to make a speech on your behalf and get in touch with Jane so that they can work together on this.

Find your MP here: https://members.parliament.uk/FindYourMP

So if you feel strongly about being in control of your own health …

If you have had B12 injections stopped due to COVID…

If you are restricted to 3 monthly injections but need them more frequently…

If you feel you have no choice but to buy B12 from abroad because you can’t access what you need from your GP then please help to make this happen…

Here’s how you can help

I’ve added a draft email for you to use and adapt below so that you can easily send a message to ask your MP to help. It would be lovely to hear of their interest in this, so if possible please let me know by commenting on the blog.

Thank you so much for being part of this, I feel sure that if we keep working together we can make this important change happen.

Together I’m sure we can make this happen.

Kindness always

Tracey Witty

www.b12deficiency.info

Draft email 

Dear

Please can I ask for your support in making injectable vitamin B12 available OTC from pharmacies.

Following a reading of this petition at the House of Commons on the 23rd of September 2020 the Department of Health responded: They state that we can’t have injectable B12 made available from pharmacies in the UK because of the Human Medicines Regulation 62 section 3.

Jane Hunt MP is making an application for a Westminster Hall Debate on this petition and she needs your help.

This issue is really important to me because………………………….

Please contact Jane Hunt MP ( jane.hunt.mp@parliament.uk ) and get involved on my behalf.

Yours faithfully

If you can’t copy the above please find a copy of the text here

 

 

Pigeonholed by a mental health diagnosis

I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.”
 

Will this devastating account of loss resonate with you? Flo’s eloquently written experience sent to me in early September 2020 follows below.

Dear Tracey Witty,

I wish to express my sincerest thanks for all your work. I stumbled across your site a few weeks ago. When I read the case studies especially of Sara and poor Paul, I cried. I’m 47 and I had my first vitamin B12 injection yesterday and will be having another 5 over the next couple of weeks.

I had a diagnosis of bipolar in 2012 whilst working as a midwife. It was my first job and I became hypomanic. My sister who was studying medicine had suggested I had bipolar several years prior and I saw a psychiatrist who put it down to life events. When I realised in 2012, that my thoughts and behaviour were erratic, I visited my GP who referred me quite promptly. I was diagnosed, bloods taken (no vitamin b12) mood stabilisers prescribed but I soon became exhausted, forgetful and I couldn’t do my job. I could barely get out of bed and so became suicidal.

I rang my mum, she and my step dad moved me home where I remained in bed basically for nearly a year. During this time, I asked my GP to refer me as I had peripheral neuropathy in my feet and I had gone off eating fruit (it is relevant). My psychiatrist, kept insisting I walk 5k a day, I’d had a back injury as a midwife so was seeing a chiropractor 3 times a week, needless to say I told the psychiatrist where to go as he wasn’t prepared to treat me holistically.

I had started a little cleaning job which I struggled with as my whole body ached and my feet were painful but I’d skip breakfast, lunch and only eat dinner. My mum was diagnosed with lung cancer and so she asked me to move out. I found a nice place to live, ate healthily – chicken, vegetables and fruit. I didn’t realise how fussy an eater I am until recently but whilst living with my mother I ate whatever she cooked. By the time the appointment for my feet came through 5 months later my symptoms had dissipated. I was back in the gym, enjoyed going to the cinema, etc. I did keep having ups and downs which were quite seasonal but I was discharged from the community mental health team.

Until 2017, I felt awful, I went to my GP with the usual sore throat, swollen glands and flu like symptoms in early February after suffering for 5 weeks. This had always been put down to a winter virus. I went back five times with advocates, each time my condition was getting worse and worse. I wanted to see a rheumatologist and neurologist. I struggled to walk in a straight line, I had hand tremors and poor bladder control. I was told that there wasn’t a need and you don’t need analgesia. I referred myself back to the CMHT (Community Mental Health Team) as again I was suicidal. I wanted to do sport, I wanted to cook for myself but I just physically wasn’t able to. 

I moved Practice and the new GP was very receptive, I had a diagnosis of fibromyalgia, being a midwife, I’d kept diaries, so I had times and dates of symptoms. I also had read about the paleo diet which I had unknowingly done in 2014. I was referred to a private rheumatologist, a private neurologist and nerve pain prescribed. Thinking this was the answer to my prayers, I started to wean myself off the psychiatric medication but didn’t care about what I was eating. Needless to say, in 2018, I got sectioned for 6 weeks. Whilst there, I insisted on seeing the hospital GP as I knew there was something wrong with my body.

I wrongly assumed I had Ehlers Danlos syndrome, my joints hurt, I was chronically constipated and even though my thoughts were manic, I had fatigue. I then phoned the local private hospital and saw their GP. Whilst in hospital, I had gastrointestinal complaints and kept vomiting with exception for one occasion, I was only offered an antiemetic (anti sickness) injection. Only one person asked “what do you think is making you sick?” And I couldn’t answer because I couldn’t remember that I had had a positive blood test indicating that I had coeliac disease.

I have had a bad stomach since I was 21, for 12 years I barely ate, (it is quite common for females who have coeliac or non coeliac gluten sensitivity to have eating disorders). In my twenties, I had a couple of trips to A & E with excruciating abdominal pain, not pregnant, not appendix just IBS or trapped wind, I was just discharged.

Last week, I found the letter from the neurologist dated February 2018 where he had written in bold the actual figure of my gluten test and it was highly likely that I did have coeliac disease but I had told him that I didn’t want endoscopy as I struggled swallowing. I was pretty manic when I saw him which he recognised and the psychiatrist quoted my appointment with him at my tribunal (to continue my detention) but the information regarding my intolerance of gluten was not passed on.

When I was discharged from the psychiatric hospital, I was a broken and confused woman, afraid of my own shadow and I stayed like that for another year. I had insisted whilst an in-patient there that I see a dietician as I was starving all the time but by the time the appointment came through several months later, I did not have the energy to attend. I couldn’t remember how to do housework, how to go shopping, I was practically mute and my brain hurt all the time. I had a CPN beg me, “what can I do to make you better?”. She’d drive me to Boots, she’d sit in the car and I’d have to go in and buy a “meal deal,” whilst waiting in the queue I’d feel dizzy and think I was going to pass out.

On Monday 3 June 2019, I changed my diet, I removed junk food and would only have the occasional piece of bread a week. I dislike most other complex carbohydrates like pasta and noodles and within 2 months I was myself, not trying to stagger around like some drunk person. I was back in the gym, found a Tai Chi class , the psychiatrist had tried all different combinations of medication over the course of a year and when I saw her in August 2019, she said we’ve finally found it. In October 2019, she asked me whether there was anything physically wrong with me and I honestly thought I’d made it all up.

This January, I started becoming ill again, feeling like I’ve got the flu, sinusitis, bad stomach, erratic periods, joint pain and chilled to the bone. I’d complain about my symptoms at my weekly appointment to a psychiatric occupational therapist technician (OTT) but I’d also tell her what I’d done to help myself, like go to the GP, colonic irrigation, keep a food diary.

I was absolutely amazed when a reflexologist was able to tell me that my B12 and calcium was low and my small intestine that it was inflamed. I’ve had lots of reflexology and acupuncture before, but this was precision. I was pretty certain it was my diet but my OTT was having none of it and would tut and roll her eyes. When you have a mental health label you get quite a lot of discrimination. I realised that I was lactose intolerant one weekend after only being able to eat yoghurts with dire consequences and again I was back at my GP’s demanding blood tests. The results showed gluten intolerance, the OTT was astounded when I told her over the phone.

Over COVID I was pretty physically ill, my bloods looked pretty okay, I had fibromyalgia symptoms but it was okay, I’d ride the storm. Done it before, did it again, I knew why. I had home help, I clued up on coeliac disease. Then a new psychiatric occupational health therapist kept ringing me in July and suggesting I go back to do voluntary work as lockdown was lifting. It was so predictable, I tried but post exertion malaise hit me for 9 days after 2 two hour shifts 2 days apart.

Three weeks ago, I rang my GP and I tried to explain the fatigue and how the CMHT (Community Mental Health Team) did not understand, I felt I wasn’t making sense. I also told her that I’d been gluten free since March, I still could not tolerate fruit (for 4 months the thought turned my stomach, I now know fructose malabsorption indicates that the small intestine has been pretty damaged, worse than lactose). I was extremely fortunate that this doctor took control and wanted me to have repeat bloods including B12, vitamin D and informed me to get the OTT to ring the surgery.

I knew I was unwell as I had awful vertigo, tachycardia and was breathless – iron deficiency. I got my results printed yesterday, I knew very little about B12 deficiency until I read your website, bought Sally’s book and I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.

Tracey, there are somethings that you are pretty certain of in life, I know what is me, I know what happens to me when I eat large quantities of gluten when I was diagnosed, I’d kept making the girls on the ward cheese scones and mini sticky toffee pudding cakes which I had to sample of course. I’m fairly sure I don’t have a mental illness but it won’t be a biggie if I have to stay on a mood stabiliser. Both vitamin B12 deficiency and coeliac/gluten sensitivity is systemic. I’ve tried to convince my best friend but they do not have medical understanding, so NICE guidelines, the Lancet and BMJ isn’t really on their reading list.

I used to have friends who have mental health issues but I couldn’t really relate to them, their overthinking or not being proactive so I cut them loose. I’ve never had a panic attack, I don’t get anxious about meeting people or going out, I have never needed anyone to hold my hand. I’m quite capable of standing my ground and drawing boundaries. My quality of life has been poor for most of my adult life, it was not IBS. Yes, I was stupid to go back to eating gluten once given a result back in late 2017 as I didn’t realise the dire consequences of it.

I just wanted the opportunity to tell my story and I’d be grateful of just a quick email back saying you’ve read it, I’m happy to pay you £120 just for that, as your work is so insightful.

I’m quite into watchful waiting, you see what arises over a course of time and I do wonder what symptoms I will get.

I’ve decided never to knowingly eat gluten again and to decline the biopsy. Similarly, I’ll be keeping an eye on my vitamin B12 levels.

Thank you in advance.

All the best,
Flo C

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Flo is not alone in being ‘pigeonholed‘ by poor mental health. When physical causes are not explored and treated then the results can be devastating.Please see this page for the many causes of B12 deficiency.

And this page if you think you or a loved one may be B12 deficient.

I created my site 7 years ago last month to help educate both patients and health care professionals. This was because someone close to me was sectioned due to B12 deficiency and was also pigeonholed due to poor mental health. I’m also B12 deficient so understand the issues you face.

If you would like to help in a small way, please use the following link: https://www.b12deficiency.info/how-you-can-help/

Thank you, Tracey x

www.b12deficiency.info

Fingers crossed…

For anyone who didn’t catch the presenting of the petition last night please see this link 

MP Jane Hunt, did an amazing job for us in summarising the written petition, the text from which I add below, but it can also be viewed on Hansard here.

This was not the Change.org Petition
To clarify, this was an entirely new Government Petition signed by me and Damian as it was being presented by Jane who is our MP.
It was however really important to mention the 94,000 signatures we have already garnered from the Change.org petition so that the strength of feeling was demonstrated.

Here’s the full wording:

Petition: Removing classification of Prescription Only Medicine from injectable vitamin B12

To the House of Commons.

The petition of the residents of the constituency of Loughborough.

Declares that a lack of B12 can have far reaching and significant effects on both physical and mental health; notes that a significant number of people who are B12 deficient are unable to absorb the vitamin from food or supplements, and so need to inject it, which they can only do at their GP practice; further notes that NICE CKS guidance states that treatment of B12 deficiency in people with neurologic involvement should include injections on alternate days until there is no further improvement; further notes that a restricted maintenance dose of just four injections per year is what is normally allowed, which can leave people physically and mentally unable to contribute to either family or society, and lead to permanent neurological damage; further notes that, in response to a Freedom of Information request asking for the clinical evidence for the three monthly maintenance dose, the Medicines and Healthcare products Regulatory Agency stated that they were unable to obtain this information; further notes that B12 injectables should be made available over the counter at pharmacies, which would bring our approach in line with that of other countries, affording those with B12 deficiency the same dignity and control over their own health as a diabetic using insulin, and reducing the workload and financial burden on GP practices, District Nurses and other NHS services; further notes that a Change.org petition started by the petitioners on this issue has garnered over 94,000 signatures.

The petitioners therefore request that the House of Commons urges the Government to remove the classification of Prescription Only Medicine from injectable vitamin B12.

And the petitioners remain, etc.

 

Now all we can do is hope and wait for a positive response that will give us the ability to treat ourselves according to our own individual need.

I will keep you updated!

Kindness always
Tracey x

www.b12deficiency.info

Thank YOU for your kindness in sharing this post. You can buy your “B12 for life” campaign pin here.