Pernicious Anaemia Society
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Recently Diagnosed - Seeking Information

I am a 49 year old male who was diagnosed on July 3, 2018 with pernicious anemia resulting from autoimmune atrophic gastritis based on a B12 level of less than 147 and a positive test for the intrinsic factor antibody. I have been receiving daily shots of B12 (the cobalamin version). They are making me shaky, fatigued, flushed, tingly, etc. and also seem to be elevating gastrointestinal discomfort.

I experienced a severe bought of gastrointestinal discomfort about 5 years ago. The doctors did a bunch of tests including scopes of both ends and said that they didn't see anything abnormal. They did say that they found some signs of inflammation but didn't see anything to attribute it to.

At the time I did an elimination fast for 4 days and gradually introduced foods to see what I had problems with. I determined that I should cut out gluten and dairy and have observed this pretty strictly since that time. Since then, and until now, I have either not experienced significant distress or just got used to whatever state my gut was in. Now, as mentioned above, I am experiencing some distress that might be attributable to the stress of my diagnosis or the B12 or further deterioration of my gut.

Despite the limited diet and gastro issues, I felt fine and vigorous up until February of this year (notwithstanding that I apparently must/should have been B12 deficient for many years to get down the level I was at). In February I injured my knee. Due to a history of getting blood clots in my left leg when I am injured/immobilized, I was put on Xarelto (a blood thinner) to reduce clotting risk associated with immobilization and surgery. I has surgery in April and the knee is recovering (although recovery may have been impaired by low B12 levels apparently).

Though I felt fine otherwise, because of discoloration in the injured leg, I had the doctors to a CBC. The CBC showed macrocytosis, low red blood cell count but hemoglobin was in range. Subsequent tests confirmed that B12 and reticulocytes were both low and homocysteine and methylmalonic acid were both high (possibly related to blood clotting and/or leg color?).

I am now working on a leaky gut diet plan both because of the discomfort and because I would like to curb my autoimmune problems. I have read that people with my problem often also have a host of others - like Hashimoto's disease, etc. So it seems like I should try to do everything I can to help my digestive system and immune systems calm down.

It seems there are many participants on this site that are experienced, knowledeable and generous with their time. So after all that, I am hoping that some can help with the following questions:

1. Does my description make sense or am I missing key things/questions?

2. Are there any critical steps that I should take to stop things from further deteriorating? Any tests, dietary changes, environmental changes, etc.? In particular are there any genetic tests I should have done?

3. Any thoughts here on whether Xarelto had anything to do with this or whether someone with PA should be taking Xarelto?

4. Does my reaction to the B12 seem normal or potentially alarming?

5. Should the doctors be doing an endoscopy on me to check for cancer, ulcers, bleeding or signs of the gastrointestinal issues I am experiencing?

6. Should the doctors be doing tests for Hashimoto's or any other autoimmune disorders? Is there anything I should be looking at to figure this out? I have the shakes that started after I got this diagnosis and the B12 shots. I have the gastrointestinal discomfort. And I have a weird problem with a couple of my nails, where they are separating from the finger starting at the end. One of them is almost half way separated. I think it is referred to as onicholysis.

6. I have read some things indicating that PA due to autoimmune atrophic gastritis is considered a pre cancerous condition. Is that correct? Does anyone know the level of risk? Are there any books that address this and what, if anything, I can do to mitigate the risk?

7. Are a lot of the folks in the society people who have PA from autoimmune problems or people who have PA due to H. pylori infection or other problems?

8. Clive, I read with interest your long time living with PA. Is there any place that you have summarized your particular form of the disease and any tips on how you managed it? Any tips or advice that you or anyone else can share would be greatly appreciated.

Sorry for the long post and thanks in advance for any advice. I have a 4 year old daughter and aspirations of being around to provide for her so I am all twisted up about this. Finding other folks with symptoms and situations like me who have managed this and following their lead will help a lot.

24 Replies
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Hi and good evening topher2018 I can really only comment on "clause 4" in your list as to how things are likely to be now loading doses are being given.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12 you are having injected.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

As you will have read my P.A. was as a result of Gastric surgery due to a burst stomach ulcer back in 1959 but it wasn't until I joined the Pernicious Anaemia Society some 8 years ago that I learned what it was all about.

To join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

It only costs £12 for a year's membership and there is a host of articles on the website which will provide authoritative answers to your questions.

In the meantime I hope you will soon begin to feel better - despite some peaks and troughs along the road to recovery.

I wish you well.

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Thanks Clive. I wish you well also. The weird thing is that I felt perfectly fine until the injury and going on Xarelto and having the surgery. I thought I had things pretty well under control with my gluten and dairy free diet.

You are not autoimmune PA correct? Do people with autoimmune PA coupled with Hashis also manage to live 47 years or is there something else for that type of person to consider?

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I probably am autoimmune as I'm diabetic and have pancreatic insufficiency too but remember I'm not a medically trained person.

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PA is not actually a useful term, and strictly speaking it is autoimmune gastritis.

It was first observed - a few hundred years before anyone had identified vitamin B12 - as a form of anaemia - megaloblastic - which lead to madness and death - hence the name.

We now know that it is actually an auto-immune condition in which the body attacks the mechanisms that allow us to absorb most of our B12 in the ileum, leading to B12 deficiency (mainly because it also means that the body is no longer able to access stores of b12 in the liver).

h pylori infection is another possible cause of B12 deficiency - and there are others - that lead to a B12 deficiency - but it is one of the treatable causes of B12 absorption problems. In theory treatment for h pylori should be B12 replacement followed by treatment to clear the h pylori infection ... and treatment wouldn't need to be for life.

Unfortunately the current test for PA isn't very sensitive with the result that it often gives false negatives - 40-60% of the time - but it is quite specific so more or less doesn't give false positives. A positive means that you have PA - a negative is a long way from ruling this out, with the result that the BCSH standards relating to cobalamin and folate refer to 'IFAB negative PA'. I mention this because it means that establishing the exact absorption problem can be a journey into madness and many of us on here do not have a definitive diagnosis - myself included - though I'm pretty sure my problem is PA as my stomach acidity is very low.

It can take years or even decades for a full blown deficiency to develop - and for many anaemia is one of the last symptoms to develop - 25% of people present with B12 deficiency without any anaemia, particularly if diet is rich in folate, or they also have problems absorbing iron so have a mixture of microcytic and macrocytic anaemias going on. I had no idea about B12 when I was diagnosed and had no useful information from medics when I was diagnosed a few years ago but I can actually trace symptoms back over 40 years. I didn't have any significant macrocytosis at that time though there were signs of it.

You can find a list of symptoms here

pernicious-anaemia-society....

The gastrointestinal problems may well be been down to low stomach acidity - if they included reflux type symptoms. The symptoms of low and high stomach acidity are very difficult to distinguish and reflux is a symptom of both. I think this is because the body continues producing bile if you aren't producing stomach acidity. Many of us - myself included - take something acid with our food to aid digestion and I have personally found that some lemon/lime juice in water will actually clear the pain if I have a bout of reflux.

Autoimmune gastritis is associated with an increased risk of cancer but the increase is very small. I would suggest looking through some of fbirder 's responses on the subject - I think he is under observation for NETS - which I believe is the pre-cancer phase. In any case, he is quite familiar with this area.

I think your best bet in respect to interactions between xarelto and gastritis would be to talk to a pharmacist - but I've had a brief look at side effects and couldn't find any red flags, though it does mention a risk of gastrointestinal haemorrhage. So probably not a good idea to continue it but no indication that it is linked to the development of PA/B12 deficiency.

drugs.com/sfx/xarelto-side-...

It is common to develop multiple auto-immune disorders - and studies imply that 40% of patients with PA will go on to develop hashis (autoimmune thyroidosis). Reasons are a long way from being clear but if you can get your GP to monitor for thyroid antibodies on a regular basis that would seem to be a good idea.

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

I happen to be in the 40% ... lucky me :(

It isn't uncommon for people to feel worse when they start B12 treatment - reasons not clear but B12 is used in a lot of key processes including the processes that reset neuro-transmitters and plays a part in maintaining the immune system. Many of the things we associate with feeling ill are actually the effects of our body fighting infections so this may be part of it. It is also possible that the brain may take a while to respond to signals coming through more strongly.

Depending on the timing of when B12 started in relation to the operation - and whether nitrous oxide was used in the operation - this may have inactivated what stores of B12 you had left and if you are unable to replace them that may have caused some problems.

The way people react to B12 injections varies a lot - I didn't thrive on the standard regime used here in the UK - a long way from it - and some people actually need to maintain much higher B12 levels after loading doses - I'm not alone in needing mine to be off the top of the measurable scale ... though there is some interesting research going on looking at why this might be the case at the moment.

You could also ask your GP to look at things like potassium levels as these can fall in the early stages of treatment for B12 deficiency (as can folate) whilst the body is healing damage - in the case of potassium this is because of the replacement of red blood cells.

Homocsyteine and MMA are two products from key processes in the body that will build up if your cells don't have enough B12 to recycle them into useful building blocks - and both are harmful so may have contributed to problems that medics aren't actually associated with B12 deficiency. Both can be raised by other factors - notably folate deficiency in the case of homocysteine. Having both raised shows that B12 is definitely involved.

Not sure about the nails. Unfortunately the symptoms of B12 deficiency overlap with a number of other conditions and if you have PA that can also affect the absorption of other vitamins and minerals.

Suggest that you look at the symptoms of B12 and identify all that apply even if they have been around for decades.

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Thanks Gambit. I really appreciate the thoughtful response. So by that definition would it mean that someone like Clive does not have PA because it is physiologically derived (I think he said it was from an operation but I apologize if I am misunderstanding something) rather than an autoimmune issue? Do you have any insights into whether someone with autoimmune PA and Hashis can have a reasonable career/life span/quality of life? Is Marty’s book relevant for someone like us? The reason I am asking is that I would hate to look at Clive’s example or read Marty’s book and get false hope only to find out that we autoimmune types are on a totally different path.

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I am struggling a bit with the hashi's and learning to live with it - only diagnosed last year and the levels of understanding regarding how to treat it are about as poor as the levels of understanding in relation to treating PA. Neither are one-size fits all conditions but the standards are set in a way that implies that they are.

It is certainly possible to lead a long and fulfilling life with either or both conditions but the medical profession don't necessarily help in achieving that - sad but true. There are some very good doctors out there - but there are also a lot that have such a poor understanding of these and many other chronic conditions - and aren't open to learning and understanding more.

I think you would have to ask clivealive about his condition. Although I think it may have stared with an operation he has been tested using an old test no longer available - the Schilling test and that showed that he had antibodies.

Martyn Hooper definitely does have PA.

In many respects PA and Hashi's are similar to diabetes - treated well it is perfectly possible to live a long and fulfilling life with diabetes and it's the same with PA and Hashi's.

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I want to comment on the gut problems that often come with PA . I did have gut problems which let me to consult a gastroenterologist . The only useful information I gleaned from him was that PA patients have low /no stomach acid ( Achlorhydria/ Hypochondria) due to the antibody attack on the parietal cells in the stomach .(He could not give me any treatment ) . Lack of stomach acid upsets the stomach flora , and bad bacteria develops resulting in bloating , stomach pain , nausea and either constipation or diarrhoea. A conservative way of alleviating this is to try treatment with probiotics . I used Symprove a liquid probiotic which was developed to treat IBS . It worked wonderfully well for me . But it’s expensive. Cheapest solution was home-made raw organic sauerkraut . Should be eaten raw not heated. It can be bought in health food shops and on Amazon . It’s a good natural way to obtain probiotics with the added benefit of extra vitamins and minerals . It’s very important to have good gut flora to gain full benefit from our food . My gut has fully recovered now . I know that sauerkraut is very much an acquired taste . So you could also try BIO-KULT capsules . We don’t realise how important our stomach acid is . There was a point when I took Hydrochloric acid with pepsin capsules to help with digestion of protein , but I was very concerned about using them . Some people do use them with success when there is a big problem with lack of stomach acid . Acidic drinks taken before eating can also be helpful . eg diluted organic apple cider vinegar, lime juice etc . I do wish you the very best in overcoming your problems .

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Thanks wedgewood. I will try Symprove.

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Was there a reason you were wary of HCl pills? How could everything stay in alignment with such an important ingredient missing from the process? Do you eat regular food or do you have a restricted diet that works without acid based on having a healthy gut biome?

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I was just very nervous using the HCL capsules ( Amazon) My gut was improving no end , just using the probiotic. . I’ve only had one short relapse in nearly 3 years , and a course of Symprove put it right . I do eat a portion of the organic raw sauerkrat daily . I eat a normal diet , but try to avoid wheat ( but I’m not on a gluten free diet ) I love acid tastes— oranges , grape-fruit .sometimes drink a glass of vitamin C powder (ascorbic acid)in water before eating . Also take a vitamin B complex tablet and a multi vitamin and multi mineral tablet daily . I never take a HCL now . I don’t need it.I inject once a week .to keep symptoms at bay . I’m just left with burning feet , which is much better than the total numbness I once had .

PA patients have to work out what’s best for them by trial and error . The medical profession is ignorant about PA and is not interested in learning . ( that’s my experience anyhow) I don’t lnow why I can manage without the HCL , but I’m glad not to . There is now a greater awareness of the importance of a healthy gut and there is more information in books etc But we are very much on our own when dealing with PA / low stomach acid . And we are all different . But just reading the posts on this forum is educational . Until the powers that be in the NHS see the light, we have to work out our own salvation . I do hope that you can achieve it . But is so very hard when you feel

exhausted and have the dreadful symptoms and your GP more or less tells you that you are imagining everything . You will work out what is best for you by trial and error .Using tips that you see on this forum .I wish you every success . Best wishes .

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Hi,

I haven't got answers to your specific questions but a list of potentially useful links.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of above book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"I determined that I should cut out gluten"

Were you ever tested for Coeliac Disease (spelt Celiac in USA)?

More B12 info in pinned posts on this forum.

I am not medically trained.

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Thanks for all the references. I was negative on the celiac test. But that could be because I haven’t eaten any gluten for about 5 years.

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To: topher 2018: BLADDERWRACK TO SOOTHE IRRITATED/INFLAMED TISSUES:

Alongside British coastline, it was used for many years in crops, given to weak horses, and now has proven history in human health.

Bladderwrack's mucilaginous thallus has been used to soothe irritated and inflamed tissues (Newall, 1996). For more see link below:

sciencedirect.com/topics/ag...

My dulse flakes come from Nova Scotia shores, eating a bit tastes like being in saltwater, near where I was raised. The iodine also helps the thyroid.

Bladder-

wrack is available in powder or gel caps at Amazon and most health stores.

Best of luck!

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Thanks Adriene!

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My pleasure, topher2018!

Just sprinkled some over my dinner of hot potatoes/carrots, homegrown cherry tomatoes salad ... having Hymalayan salt not enough, only seasalt contains iodine.

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Sounds good! I am only able to eat bone broth right now due to level of gut distress. I don’t know if it is a result of a giant pareital cell killing spree, stress from the diagnosis, the b12 shots, the Xarelto, or something worse.

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In addition to items in my new potatoes salad, I added sliced/chopped sweet onions. Rich in sulphur they contribute to flora re-growth, have them 3x/day

mostly over warm food, cold food does not contribute to peristaltic movement.

Have you tried boiled cauliflower? It is very gentle and great mashed with lemon juice and drizzle of olive oil (my salad dressing). Also, ripe avocadoes kept in the fridge are full of vitamins and good oils, mashed they can be added to boiled veggies, with the dressing. I have one every day for breakfast. I suffer from bloat

(food goes down, burp comes up), sounding as if I too have athropic gastritis.

Another issue I came across that might be of interest was the description of skin on your legs. Just ordered homeopathic combination by Belgium manufacturer,

of natural ingredients (herbs) plus one mineral. The description on the box containing this 30ml bottle is interesting: "For skin problems". But the name of the item is "UNDA - Chelidonium Plex - Homeopathic Remedy Supports Liver, Kidneys, and Digestive System† - 30 ml Liquid", Google it and see for yourself. My order arrives tomorrow, for am taking for overall cleanse, for the skin on my legs is mottled like yours. Notice chelidonium is milder herb than milk thistle. My lactic acid level is very high, from inflammation on swollen ankles and lower leg muscles. Skin got very red, white when touched, but have no gout or high blood sugar. That drainage has to occur through the lymphatic tissue, and our liver/ gallbladder/kidney triad does not get the attention it should. Lycopodium in pellet form is also good for the liver, mine arrive this evening, a bit late today.

But great Amazon has next day service. Between alophatic and naturopathic I choose the later, always checking for side effects. For instance, horse chestnut is helpful for swollen legs, and I chose it for has no side effects. Will let you know how these items work for me. Suggest a bit of stronger food, light but always balanced in the sodium/potassium equation to achieve homeostasis. Nerves require sodium to operate.

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Somehow this didn’t end up in the right spot. Reposting here to adriene.

This is amazing information. Thanks for taking the time to share. I would like to stay on the naturopathic side but don’t have the knowledge to filter the nonsense from the legitimate. I would trust, however, something that has actually worked for someone with our condition. I am following the GAPS pretty much. I just started testing things and pretty much everything hurts. I am chewing everything a hundred times, taking an enzyme pill with each meal, drinking apple cider vinegar water with each meal, eating sauerkraut with most meals and not drinking any alcohol or pure water with the meal. I do eat avacado. But I think the leaky gut experts on the Internet say to avoid all nightshades which rules out potatoes and tomatoes. I think they also said no cauliflower but based on your advice I will try that in a bit. I think they said I could eat cooked onions. I hope HCl pills help.

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The body is an incredible machine, we only deal with portions of it, most times. It has come to mind that your surgery could have disrupted the vagus nerve, aka. nr. 10, the largest in our bodies. It goes from the neck all the way to the feet, branching out here and everywhere, in every system, but its center is in the plexus. It is quite possible that a nerve could have been touched during your surgery, hence the irritation and everything going haywire in your solar plexus. If this makes sense, stabilizing the situation is possible, sometimes with simple breathing techniques. Close to the vagus is portion of the Gallbladder Meridian (Chinese Acupuncture or Acupressure).

brainprotips.com/vagus-nerv... has references to gagging reflex, inflammation, IBS, syncope, I had all of these. Tomorrow I will send you diagram of the entire vagus, then you can pinpoint the site of your surgery. I learned to use Cognitive Therapy to understand reasons and causes for everything in the human body, looking for evidence and have been doing so for the past 27 years. I go to doctors, for blood work or test results I requested, but not for drugs or procedures. Meantime, hot towel applications over your solar plexus, especially with an essential oil like lavender applied first will ease tight muscles. Imagine that Amazon missed my today's delivery, waited all day. Have another tomorrow, my UNDA combination. Will revert.

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The neurological symptoms of B12def. are very subtle and often take years to manifest but it looks as though anaesthetic for surgery would have inactivated your already low B12 topher.

My family and I all have linked but very varied autoimmune/thyroid/B12d. symptoms that were misdiagnosed and undertreated, as many GPs no longer take case history, recognise symptoms or get to the root of a problem......

Dr K is a neurologist/Harvard researcher and highly articulate lecturer to post graduates. His extensive research leads him to believe that damage to the vulnerable thyroid, is one symptom of autoimmune disease. Yet this is not generally acknowledged, nor is the fact that autoimmune disease and it's root cause, leaky gut/brain connection, almost inevitably leads to poor absorption of all essential nutrients from intestinal permeability, ( B12 being the most difficult vitamin of all to absorb because it goes through a complex process in the body - beginning with hydrochloric acid, which vastly decreases with age).

I found Dr K's research put it all together but is very readable for the layman.

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Forgot the links :

amazon.co.uk/gp/product/B00...

amazon.co.uk/gp/product/B00...

I take a good probiotic and daily spoonfuls of Bional organic sauerkraut, which alleviated all longstanding digestive problems 🤗

Hci didn't help - aggravated the gastric problem, which I believe is quite common. Good luck topher

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This is a good one on the benefits of sauerkraut, if you haven't already seen it :

organicfacts.net/health-ben...

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Here's a pic of the vagus, plus article by Dr. I am not familiar with, but content does make sense, if you bypass certain paragraphs dealing with autism. The connection of the vagus with the remainder of the body is one not easily understood. Also, I would not pay much attention to remarks at bottom.

The Gallbladder Meridian has a branch mentioned in earlier reply, that comes

up from the foot. It is actually connected to portion of the vagus. Will forward another article on that aspect tomorrow:

drsircus.com/general/functi...

The new specialty now is neuro/gastroenterology, so major is the connection between our brains and solar plexus. Ninety-five percent of our serotonin is produced by neurons in our intestines.

In good health!

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Plse disregard one link sent yesterday (brainprotips), it was safe when I copied it months ago, but deteriorated to unsafe. I use Malware.

Here are additional links about the B12 form you take, and -- SIBO ----(that you might have) in addition to Vagus/Gallbladder Meridian connection on left leg:

drjondunn.com/Newsletters/2...

and

drjondunnnewsletters.com/Ne... and

pacificcollege.edu/news/blo...

practical, better than Sircus

Horse chestnut: Traditionally used for the symptomatic treatment associated with venous insufficiency and varicose veins. The active ingredients of Horse Chestnut seeds are triterpene saponines (about thirty) collectively known as aescine or escine. Aescine increases vein wall resistance and reduces permeability (seepage), objectively reducing venous insufficiency symptoms (edema, swelling, etc.). Horse Chestnut seed extract is known for its phlebotonic, antioxidant, anti-inflammatory and vein wall protector effects.It inhibits elastase and hyaluronidase activity. These two enzymes degrade the vein wall and the surrounding tissues (like collagen) therefore increasing venous insufficiency symptoms and progression. Were you prescribed compression knee highs?

Hamamelis Plex by UNDA is a synergistic preparation containing herbs known for increasing vein elasticity, reducing blood-vessel fragility, and possessing astringent and liver-cleansing properties to act on the peripheral venous system and improve the integrity of the vascular walls.

Indicated for venous circulatory conditions, including varicose veins, vascular fragility, heaviness in the legs and venous insufficiency.

I do not use practitioners, but if you want to explore, locate one through postal code in this site,, with example about improvement with lycopodium f/liver:

britishhomeopathic.org/char...

Between your leg survery and recent diagnostic you have been through lots

but where there is a will there is a way. With best wishes,

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