EGPA Vasculitis alternative medicine

[Rarity1]

hi everyone, I feel the need to share some important information. I was diagnosed 5 years ago with this rare disease and spent 4 years on a rollercoaster ride with all the prescribed medication and their side effects. Everything from depression, anxiety , exhaustion, depths I never want to sink to again. My blood tests were all off the charts and irregularities and my body failed to produce cortisol, high eosinophils, high neutrophil, high platelet. Extremely high white blood cell and it goes on. Felt like every day was going to be my last. I also own my own construction company which I still needed to run along with my household. Last week I had my latest test results back from Addenbrookes and they showed a remarkable improvement. Why? Well for the last year I have been using methylene blue pharmaceutical grade. It works by harnessing the mitochondrial system which is where most diseases come from. I’m living proof that this stuff works as I reduced my medication from 24 tablets a day down to 6 and I’m getting my life back. Do your own research folks and don’t listen to everyone else’s opinions and advice as they are not always correct

[Pitville-Man]

Hi Rarity1. Have your doctors ever talked to you about biologics? I have eosinophilic asthma and EGPA and they are very well controlled by benralizumab, which has completely suppressed the eosinophils. Could be worth a conversation?

[Rarity1 in reply to Pitville-Man]

Appreciate your input thank you

[Candy-rojo]

Delighted for you getting your life back. Never heard of methylene blue. How did you get onto it?

[Rarity1 in reply to Candy-rojo]

A friend of mine mentioned to me about a book he read (he reads all sorts) You can buy on Amazon Methylene blue-Mark Sloane . Incredibly interesting if you’re looking to improve your life instead of being a guinea pig full of man made drugs. It’s actually the blue dye they inject into your veins when having a CT SCAN. It’s also used in various emergency rooms abroad . It along with the chlorine dioxide solution that I’ve used have to my life around

[Pompey3]

Hi super interesting to read this, thanks for posting.

[LindaMRich]

Thank you for posting your experience /findings. I will have to discuss with my consultant. I wish I could do my own research into what you have mentioned & biologies - but in truth, I can't undersatnd most of it ~ so have to leave well alone. However, speaking to my medical team may highlight things when I mention this to them. Thank you.

[Rarity1 in reply to LindaMRich]

Just bear in mind that your medical team may poo poo it because it’s very cheap to buy unlike all the other drugs. Book by Mark Sloan- methylene blue on Amazon is worth a read as it explains everything for people like us

[zoe69 Administrator Volunteer Vasculitis UK]

Please, never take an over the counter medication or supplement without discussing it with your consultant.

[Rarity1 in reply to zoe69]

I understand you saying this but what has worked for me is broadening my knowledge and listening to my body as I said I had a few years of zero positivity which had to change in my book as I’m not ready to give up. But thank you for your input anyway

[AtopicGuy]

Mitochondria are the power stations in our cells. By knocking out some of them, we can hamper the activities of our overactive immune systems. Knock out too many, however, and too many healthy cells will suffer toxicity, too. Careful dosing and monitoring is crucial. The link below says:

"Methylene blue [MB} is a safe drug at a therapeutic dose of less than 2 mg/kg; however, when levels are greater than 7 mg/kg, many of the adverse effects it exhibits will occur."

MB can interact dangerously with other drugs, including antidepressants:

"Serotonin syndrome has been found to occur when combining serotonergic agents with methylene blue at a dose of 5 mg/kg... patients taking any drug with serotonergic activity, such as SSRIs, should avoid the administration of methylene blue due to the risk of serotonin syndrome."

MB toxicity can harm the kidneys:

"Methylene blue use also requires caution in patients with renal failure due to its ability to reduce renal blood flow."

There is no antidote for MB overdoses or allergic reactions:

"The research concludes that there has been no antidote for treating methylene blue toxicity to be found to exist. If anaphylaxis does occur, the administration of methylene blue should stop immediately and promptly, followed by supportive care, although severe anaphylactic shock with methylene blue is quite rare. Methylene blue may become potentially fatal when used in combination with medications that include or increase serotonin; this is because of its monoamine oxidase-inhibiting properties. It may precipitate serotonin toxicity at doses greater than 5 mg/kg."

ncbi.nlm.nih.gov/books/NBK5...

[Rarity1 in reply to AtopicGuy]

Are you a specialist in this field or is this all something that you copied from an article? I’m speaking from experience

[AtopicGuy in reply to Rarity1]

I'm a retired scientist with thousands of peer-reviewed studies at my finger tips online. Follow the link I gave and read it for yourself. Every drug has potential side effects; everything (including water) has a maximum safe dose. I have no axe to grind.

[Paprika60]

It is great that you are getting help regardless of the source. And I completely understand how doctors throw drugs left and right when you first start because they also don't know exactly how certain drugs will help or not...all very hit and miss and some of us get lucky and some don't. I am very reluctant to try anything drastic unless there is hard scientific backing only because I have gone down that route so many times looking for a silver bullet and suffered physically due to side effects and also wasted so much money. But you found something that has worked for you so that is great and lucky. But please make sure to always have the tests and etc. done. Keep going!

[Rarity1 in reply to Paprika60]

Thank you , I have regular tests and they’ve improved dramatically. It’s funny as I’m trying to share a positive experience here to possibly help others but I find people blinkered because we are taught to trust the doctors and fortunately I think differently these days

[GCAinCanada]

Thanks so much for posting this information. I have Large Vessel Vasculitis and in remission for 2 years. (and off all drugs) I was on prednisone and eventually biologics but didn't want to continue forever on them. I changed my diet and take lots of vitamins (especially Vitamin D 10,000 IU) every day. I will definitely read up on this. I am not wedded to our medical system as they don't even know what causes autoimmune disease and often treatment is often a shot in the dark. Good luck on your recovery! 👍👍

[Rarity1 in reply to GCAinCanada]

I really do hope to open people’s eyes , I had to experiment, sometimes what you read isn’t the truth though. Google and search engines alike often smother this kind of thing as it doesn’t produce the revenue like other drugs. They seem to want to sell you suppressing/ masking drugs rather than cures. It’s an amazing pain reliever, helps with the swelling in blood vessels, aids tissue repair etc . Definitely worth a look at for so many reasons. Good luck to you too