Smygen
Not so serious ;)
- Messages
- 40
They've let me and thousands of other patients down over many decades.
I think the number would be millions. Not thousands
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
They've let me and thousands of other patients down over many decades.
Have you ever seen the look on the face of a mechanic who is presented with a breakdown where the vehicle owner has had a go at fixing it themselves ? Or heating engineer called into mend a boiler where the home owner has tried a DIY repair, or an Attorney picking up a legal case that their client has kicked off without taking advice ? Apart from the very obvious failings, in each of these cases the professional is faced with an implied undermining of their professions competence a devaluing of their years of study/practice/training and accumulated expertise because anyone can do this. Medical researchers have the same professional vanity being presented with a simple observation allows a researcher to conclude theres something interesting here without having to justify why a non expert may be mistaken. Submitting to rsearcher an uncontrolled, unsupervised test of an off prescription drug as evidence of something important, risks both sparking a vanity reaction at an amateur invasion of the researcher's professional purview, and horror at (in their perception) a bunch of internet cranks encouraging potential drug misuse.
Perception is everything if you want people to take you seriously, and while it may be galling to have to suppress expression of ones own intelligence and inventiveness flattering the professional egos of others is nevertheless frequently the best way to get heard.
IVI
That being the case, how would you suggest that we encourage serious researchers to look into issues such as this when all we have is a series of anecdotes?
I just spoke to the girl, who claims that after years of suffering she was totally cured by few rounds of antiparazitics: albendazol, ivermectin and praziquantel.
Is there anybody who has a similar experience?
Really ? I would love to read her story ... are her postings online or is this an offline contact of yours ?
I took the triple antibiotic therapy (secnidazole, nitazoxanide, furazolidone) for blastocystis hominis recommend by the Centre for Digestive Diseases in Sydney (www.cdd.com.au) 2 years ago.
The drug combo was an absolutely horrendous experience -- BUT -- I had what seemed like a complete 100% resolution of my CFS, food reactions and emotional problems (axniety, depression) for about 1.5 weeks before it relapsed completely over night.
You can never be sure exactly what the abx are killing though, because I didn't know I had SIBO at that time and it's highly possible that the combo killed my SIBO and it relapsed.
Nothing is ever easy!
I think it does prove that the origin of your symptoms is in your gut...do you agree ? I've had similar experiences - in the beginning a low carb diet resolved all symptoms immediately, later on it did after a week or so, now it does not.
I just spoke to the girl, who claims that after years of suffering she was totally cured by few rounds of antiparazitics: albendazol, ivermectin and praziquantel.
Is there anybody who has a similar experience?
orion: Mebendazole is an anthelmintic (worms). The more devastating parasitic infections are mostly protozoa.
Lala: My illness tends to 100% revolve around my gut symptoms. I don't believe I have any other infection outside the gut (including viral).
It is an online contact, but not English. She wrote she had been completely healthy for six months, then she relapsed little bit so took another round and again got better. Very interesting.