I have recently been diagnosed with chronic eosinophilic pneumonia with aspergillus fumigatus (agains a backdrop of antiphospholipid syndrome (APS) and Sjogren's Syndrome). I am being treated with high-dose prednisolone (started with 1g/day IV for two days, now 30mg/d oral for a week, then 25mg/d, then 20mg/d, then decreasing to 5mg/d.) Antifungals may be added in later.
I added in some olive leaf extract capsules to help deal naturopathically with the fungus while the steroids are dampening down the inflammation. Has anyone else done this? Did you experience any sort of 'die-off' symptoms? i.e. did you actually feel worse as the fungus was being killed off and/or expelled from the lungs?
Also, when using steroids in a situation like this, have you experienced feeling worse as the healing process starts?
It's very hard to describe but sometimes I feel just woozy/wobbly and absurdly tired, yet not sleepy. This is similar to but noticeably different from how I felt before treatment - when the closest description I could come to some of my symptoms was feeling drunk.
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Coppernob
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When using any form of medication (particularly at high doses) you are likely to suffer side effects so these may account for your tireness and other symptoms.
Olive leaf extract has no know activity as a systemic medication against fungal infection.
Oregano is known to have antifungal activity in concentrated form in laboratories. It has not been successfully tested as an oral drug to treat systemic infection such as aspergillosis - if you can imagine that our bodies would dilute it to such an extent it becomes useless unless we were to try to eat huge amounts of oregano. At that point there may well be toxic effects just as there are with most drugs.
It may be useful on surfaces like skin or as a fungicide to prevent food spoilage but as a drug to in pill or oil form for us to take by mouth it is unproven and unlikely to have significant antifungal effect in our lungs.
Quoting from Wikipedia: In 2005, the US Federal Trade Commission brought legal action against a firm that had claimed oil of oregano treated colds and flus, and that oil of oregano taken orally treated and relieved bacterial and viral infections and their symptoms,[11] saying the representations were false or were not substantiated at the time the representations were made, and that they were therefore a deceptive practice and false advertisements.[12] The final stipulation on the matter said no representation as to any health benefit could be made without "…competent and reliable scientific evidence…".[13]
I was subjected to toxic mold for a long period. I was diagnosed with chronic sarcoidosis. Oregano oil absolutely 100% worked on me. Unless you have symptoms and try it and watch them disappear and reappear entirely based on whether you are taking the supplement - no one or website can tell you. It works and continues to work for me. There are different brands of it and some do not work - no idea why. Not a lot of money in drug companies announcing that simple Oregano oil can cure you - or not a lot of money to research it - so no there may not be any expensive research or papers on it. Just individual people sharing their stories of success. Try it. Absolutely no side effects - just more positive benefits - lost all other allergic reactions i had begun to experience too - no longer allergic to dogs, perfume etc. Wonderful. Try a few different brands takes about 2 weeks of taking to see results and two weeks to go back to how you was before if you don't take it. Seems it has to stay in your system to work.
We have to issue a general caution that no-one should actually stop taking the medication given to them by their doctors without their consent and supervision as that could have very serious consequences. I know most people would not think of doing that but there are always a few who might try it.
The fact that some brands do not work for you is interesting and illustrates that these types of supplements/herbs lack consistency - let us hope the manufacturers do the research work and improve them - this is one aspect of why these products need to be better regulated.
If someone is in an obvious position to profit from these observations it is the current manufacturers/distributors of these products (i.e. those making a huge profit out of them right now) rather than drug companies (who cannot profit from testing the health benefits of a whole plant product which is intended to be used as a complex mix of chemicals rather than a purified drug). If they were to invest the many millions of pounds needed to prove that these herbs are beneficial then they would have cornered the market!
There is likely much to be gained from looking at these products more closely, but investment of money is vital to improve them and define their usefulness clearly.
The only products that are discouraged in this group are those that have no supporting evidence for their efficacy. The standard of evidence required is one where the medication is tested blind and on sufficient numbers of people to make conclusions statistically valid. Better still the research is repeated independently with the same result.
If we are to accept a lower standard of evidence we will be left in a state of confusion as to what does and does not work while people's money is paid for both.
I understand your frustration, however - this forum is run by the Fungal Infection Trust (a UK registered charity) who employ me to support people living with fungal infection or allergy. I am not paid to be obstructive in any way but I am here to try to avoid people taking risks or paying money for treatments that don't work or are unproven. I have an open mind with regard to any form of treatment but the least I can do is ensure that they might work before agreeing with their use.
I agree that some people will end up here after being dealt with poorly by medical professionals and one thing I do on behalf of FIT is feedback issues that come up here with the clinicians I support here at the National Aspergillosis Centre in order that we may improve how we approach our patients.
I also agree that to quickly dismiss a remedy on the grounds that there is 'no evidence to support its use' is sometimes not right. In those cases I give my best guess with appropriate warnings.
I try to take a neutral stance and develop the argument on both sides by referring to high quality evidence rather than the claims we see proliferating around the internet, often designed to fool the unwary into paying for 'snake oil'.
My T1D 34 year old sister survived ARDS came off vent after 2 weeks then fell ill with asperilligus in her lungs went back on vent hospitalized 46 days given 15% chance to live but she has beat all odds....she is on strong meds still...my question is they found a new lesion and nodule In bottom of lung and were awaiting bronco results but does this mean it is becoming invasive?
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