Fibromyalgia may be a condition of the immune s... - Thyroid UK

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Fibromyalgia may be a condition of the immune system not the brain – study

helvella profile image
helvellaAdministratorThyroid UK
14 Replies

This continues the Guardian articles already posted in the The pain that can't be seen special feature:

Thursday’s link:

Fibromyalgia may be a condition of the immune system not the brain – study

New research challenges widely held view of the condition and could pave way for better treatment

Linda Geddes Science correspondent

theguardian.com/society/202...

Wednesday's link:

healthunlocked.com/thyroidu...

Tuesday's link:

healthunlocked.com/thyroidu...

Monday's link:

healthunlocked.com/thyroidu...

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helvella
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14 Replies
Hypopotamus profile image
Hypopotamus

Isn't the immune system controlled by the brain?

helvella profile image
helvellaAdministratorThyroid UK in reply to Hypopotamus

No - I don't think it is.

It is mainly bits like skin, thymus, bloodstream, spleen, lymphatic system, bone marrow, etc. - though, of course, the brain interacts in lots of ways.

niaid.nih.gov/research/immu...

Hi been saying this for years if something in your body is out of sync it will effect the rest of the body in the long term.

Had thing with Quack "Raynauds that only effects hands and Feet" Err no it's blood so effects every/anywhere and many will have a Disposition either genetic trait/injury or other things that will mean Raynauds will effect that part especially.

Ive had Pneumonia and Pleurisy now if get a Chill like a small change in temp from an open door etc i will feel through coats and all straight in my lungs/chest and if carry on will feel ill like going down with something and have had issues next day.

We are more or less a pile of Bacteria's and Enzymes with some hormones thrown in to season the mixture! and we grow from that just like Baking a cake and we all know about the sponge cake?

Get ingredients/Quantities wrong a bit and the cake goes from being perfect to stooge or Bricks and if baked wrong your sponge is ....Well Toast!

But it's a lot more complicated than just take this then as many have been exposed to things which could be anything or there forebearer's have? and has we come from two bloodlines/Genetic lines no one really knows how they have been shaped and so on?

penny profile image
penny

This could explain why the Coimbra Protocol seems to work for fibromyalgia.

helvella profile image
helvellaAdministratorThyroid UK in reply to penny

I suspect many members will be wondering about the Coimbra Protocol and quite how this post explains it working in fibromyalgia?

It would help if you could expand on your comment. :-)

penny profile image
penny in reply to helvella

The Coimbra Protocol was developed by Dr Cicero Coimbra a professor of neuroscience. He uses large doses of vitamin D to correct autoimmune diseases, with a very high success rate. There are reports and testimonials of treatment of fibromyalgia. Dr Coimbra stresses that taking very large doses, 100,000-250,000iu of vitamin D per day must be done under the supervision of a Coimbra-trained doctor.

RedApple profile image
RedAppleAdministrator in reply to penny

penny In case anyone reading here is remotely interested, here is a link to the website for this highly questionable 'protocol' coimbraprotocol.com/general...

Note that the website doesn't seem to have been updated since 2017.

Also, there are no listed 'practitioners' for this protocol for the UK and by far the majority of apparent 'testimonials' are from MS patients outside the UK.

I suspect that this warning may have something to do with why there are no UK doctors listed, as the protocol is extremely risky, involving massive doses of vitamin D: 'THIS IS A MEDICAL TREATMENT AND CAN ONLY BE DONE WITH THE SUPERVISION OF A MEDICAL DOCTOR. '

I am also little relieved to note the following warning, which I think is extremely important:

Are there side effects to the Coimbra Protocol?

The possible side effects of taking high doses of vitamin D for extended periods of time are an excess of calcium - in the blood (hypercalcemia) or in the urine (hypercalciuria), and loss of bone mass. Excess calcium can be easily avoided with a diet free of dairy and calcium-enriched foods, and regular lab tests to ensure calcium levels are kept under control.

To avoid loss of bones mass, patients on the protocol are instructed to practice a daily routine of aerobic exercises, like a 30 minute fast walk, for example. Those who cannot practice aerobic exercises might need medication with time, such as bisphosphonates, to prevent osteoporosis.

Although this site doesn't itself seem to be promoting or selling any specific supplement brands, that doesn't rule out the possibility that this 'doctor' and his merry band of 'practitioners' have financial interests in the sales of vitamin D and other supplements.

I haven't scrutinised the site, but I didn't see much mention of 'autoimmune diseases'. In my opinion, it is extremely foolish to assume that vitamin D is a 'one size fits all' cure for anything at all.

I could go on and pull this so called 'protocol' to pieces even more but I'll simply conclude with the well known phrase for any extremely dangerous activity 'Please don't try this at home folks'.

helvella

Ruby1 profile image
Ruby1 in reply to RedApple

And as someone whose relative has recently been extremely ill in hospital with hypercalcemia, it is not to be taken lightly! It is deadly. Thank you for posting RedApple

penny profile image
penny in reply to Ruby1

I’m sorry to hear that, Ruby1. That is why Dr Coimbra states that the protocol must be done under medical supervision by a doctor trained in the protocol.

penny profile image
penny in reply to RedApple

The website of Dr Coimbra seems to have a post of 31st May, ‘21 and the facebook page for the Coimbra Protocol the 5th June, ‘21.

Why did you put ‘doctor’ in inverted commas? Dr Coimbra is an MD and Phd;

Cicero Coimbra MD, PhD is a neurologist and professor at the Federal University of São Paulo, Brazil. Over the past two decades, he has created a clinical protocol to treat autoimmune diseases with the reestablishment of adequate systemic levels of vitamin D.

I have contacted Dr Coimbra in the past about a friend who is paralysed with MS; Dr Coimbra was very helpful and replied in extremely good English; I’m sure that if you contacted Dr Coimbra and stated your objections to his protocol, pulling this to pieces, he would respond. He is loved by those he has helped and there are many. I cannot understand your animosity with regard to Dr Coimbra. The fact that there are no practitioners in the UK means nothing; there are many in Europe, and people in the UK following the protocol.

helvella profile image
helvellaAdministratorThyroid UK in reply to penny

I don't and won't use facebook at all.

Afraid I can't find anything like a comment dated 2021 on the site. Every page I have visited is dated 2017.

Also, I might have missed it, but I didn't notice any thyroid issues being resolved? Which is what this forum is about.

And I think that the potential danger of ultra-high doses of vitamin D cannot be overstated. Even if he says that it must be done under medical auspices.

Further, he emphasises how the patient is so important but, if that is the case, how disappointing that he doesn't appear to have published information to benefit other patients who cannot see him. Nothing, for example, in PubMed.

penny profile image
penny in reply to helvella

I haven’t read this through:

Study about the Coimbra Protocol on PubMed:

Vitamin D Resistance as a Possible Cause of Autoimmune Diseases: A Hypothesis Confirmed by a Therapeutic High-Dose Vitamin D Protocol

Dirk Lemke et al. Front Immunol. 2021.

RedApple profile image
RedAppleAdministrator in reply to penny

Penny, You haven't given us a link but I assume this is the paper you're referring to frontiersin.org/articles/10...

I suggest you scroll to the bottom of the paper, to the (only) comment by Petra Vukorepa on 07 June 2021. I hope Petra won't mind me quoting it in full here:

Petra Vukorepa As an autoimmune patient, and a medical student, I am urged to comment on this article as I think it does not portray the treatment. Since 2015 I have been very informed about the Coimbra protocol and its (lack of) success. Especially in other than MS group. The article and Tables in it say "lower doses are SUFFICIENT for other autoimmune diseases"; unfortunately, this gives off wrong impression that Coimbra protocol creates remission for other autoimmune diseases, like rheumatic, while it is EXTREMELY rare to get remission from high dose vitamin D in rheumatic disease, which authors certainly know. As well, many of my friends had very severe worsenings of their diseases, on Coimbra high doses , which are authors also informed as I believe some of them were their patients. I have also MS friends with equal worsenings from Coimbra and not tolerating high doses. When in 2015 Coimbra protocol came to my country the patients were extremely excited and believed 95% claims by great professor Coimbra. Unfortunately, many are left with a bitter taste in their mouth because the success ended up being way, way lower. Online Coimbra FB groups don't allow sharing bad experiences. To our unfortune, i cant speak about the success of Coimbra without proper studies, but I can say that among 100 friends and acquitances that I know and talked into trying this protocol, not even 10 of them stayed in remission. The number is even much worse for other than RRMS, where I barely know anyone with a rheumatic disease in remission on Coimbra protocol. Thus SUFFICIENT is very misleading ..

helvella profile image
helvellaAdministratorThyroid UK

I think this post has had opportunity for discussing the article and is now relating largely to other issues. For that reason, I am now closing it.

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