Advice re altering regime

[Lurcher-lady]

I could do with a little advice please. Around 10 months ago went to doc with leg pains mega tiredness, pins and needles, blurred vision, tinnitus etc etc and after blood tests the only thing with a pointer was low B12 - 135. He told me to take oral supplements from chemist. No change so I went back, he told me I had polymyalgia. Not wanting to go down route of steroids etc I pushed for B12 jabs. Got retested and then began the battle of ‘your counts are now up so your B12 is fine, you don’t have a problem’. Eventually got loading doses which helped me get back to normal apart from blurred vision and tinnitus. No luck with docs when asked if I could carry on and when legs and hips started to ache again I started to SI, twice a week, then down to weekly and eventually tried to get to monthly. The pain and tiredness came back so I went back to weekly. My question is this, do I go back to loading doses or carry on weekly? Also if it was polymyalgia surely it would not have subsided originally with B12 shots. At the moment I’m sleeping very badly as the pain wakes me and I have to change position constantly. It’s a bigger struggle at night than in the day, although that’s bad enough. Just looking for thoughts from those of you in the know. Thanks for reading

[Nackapan]

When I changed from every other day to weekly I stayed there for a while and then went to 2 weekly .I have tried 3 weekly 3 times and it hasn't

worked. So I'm on 2 weekly at present. I I didnt go back to loading doses again.

Only my opinion but perhaps Carry with weekly and see if your symptoms settle

I dont know anything about polymylagia to comment

It's very hard to know what's what so I now dont change too many things at once.

Hope tour symptoms settle again nothing worse than pain especially at night.

[fbirder]

Ask for a referral to a neurologist. Ask the GP why your 'polymyalgia' is causing pins and needles.

[Lurcher-lady in reply to fbirder]

I will do that. Will a neurologist know I’ve been self injecting or could the higher blood results be due to oral supplements Would you suggest increased frequency of SI meanwhile?

[fbirder in reply to Lurcher-lady]

I would tell the neurologist that you've been self-injecting because your doctor refused to treat you.

I always say - the correct frequency for injections is the one that best keeps your symptoms at bay.

[Lurcher-lady in reply to fbirder]

That’s exactly what I was thinking. Thanks fbirder.

[LynneG]

I think GPs just often guess. I really don't think it matters what they generally diagnose you with. Poly just means more than 1 and myalgia I believe means pain in muscles - so affecting more than one muscle. I think best work on deficiencies to get to optimum healthy levels - normal ranges are often just average. For instance Japan's B12 normal range is 500-1300. So if your serum B12 was below 500 - there would then be concern in Japan. Just remember you kill off, I think it is 3 billion cells per day which means you have to replace and build 3 billion. What are you rebuilding your cells with ?- the nutrients that are absorbed into your blood stream from your food, the vitamins and minerals that are made by/and released by your micro organisms making up your gut microbiome and water that you drink and the air that you breathe. That's it.

If you give a builder poor materials he will build a shoddy house - cells that are compromised and don't work effectively and they replicate as the blue print into even shoddier ones.

So I have learned that we have to provide the nutrients we need and at the same time don't hamper by eating/drinking rubbish that the body has to use vital energy to get rid of what it sees as not needed and harmful.

A close friend was diagnosed with polymyalgia, his GP wanted to start him on steroids and other anti inflammatory meds. She referred him to a Rheumatologist and a neurologist who found nothing and referred back to GP. The GP noted absurdly low vit D at 25mmol/L. As he had always walked to work all his life, cycled for leisure, was slim , holidayed abroad several times per yr etc - it was a shock to develop muscle weakness and pain and have such a low vit D. The GP prescribed 45000iu of D3 pill once per wk but he also took 6-8000iu D3 drops daily to get his D up quickly (along with K2) Within 3-6 months he got his serumD up to 150mmol/L and had started to feel a lot better. He started taking 5000mcg of methyl B12 sublingual even though his serum level was in the low normal range. Obviously the GP had taken general blood tests, so could see serum calcium ok. Liver kidney function tests. he started to improve towards optimum function by drinking lots more water. He went on a gluten/all grain free diet. Stopped using polyunsaturated oils and replaced with butter and coconut oil. Ate organic fruit and veg and and healthy red meat and dairy from grass fed herds only and free range organic chicken /eggs. Drank water, clipper tea bags, coffee and took some supplements. He refused all steroid /DMARDS meds and 2 yrs later he has no symptoms

Most know that if you take antibiotics that they will devastate the body's microbiomes and you have to strive to get your gut microbiome back into balance or your health will deteriorate. What you have to remember is that insecticides and herbicides sprayed on non organic fruit and veg - kills bugs , thats the point of the farmers using but they kill your beneficial bugs in your microbiome too. They also kill the mitochondria which are the bacteria that create energy and so your cells to function. All life contains mitochondria in cells - life can't exist without - so trees , plants too. The mitochondria in say a carrots cells, when eaten will add to your mitochondrial numbers - this has recently been discovered. Eating non organic fruit and veg and grains will not only therefore kill your beneficial bugs and add to the poisons that need to be eliminated from the body but we are also not getting the beneficial mitochondria from the food eaten. As we age (from 20yrs)our mitochondrial numbers decline. Once we have lost 2/3rds of our original optimum number - I think it is 2/3rds - life can't exist - we are dead. So it's important to value the importance of our mitochondria and foster and nourish them as well as the beneficial organisms making up our microbiomes. Red with near infrared light has been discovered to increase the health and numbers of our mitochondria. Mitochondria produce ATP our energy, the energy for our individual cells to function - there are 1,000s of mitochondria in each heart, brain, and eye cell as they are the organs that require the most energy to function. Other cells have a few less

[Lurcher-lady in reply to LynneG]

This makes so much sense LynneG and follows a lot of my own thoughts. I refused the steroids and the long term antibiotics (when they said I had Lyme). Interesting about the Mitochondrial numbers and interesting that I have recently had cravings for raw carrots (coincidence?). Love your analogy of builder and shoddy house. Thanks for your very detailed explanation.