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.
... I take substantial amounts ibuprofin for pain and inflamation. But I don't think that impacts the immune system.
Just curious... what data do you have to indicate this is an appropriate treatment? What problem are you trying to solve?Can anyone help me out here please. Maybe @Jonathan Edwards.
Do immunosuppressants permanently alter the immune system?
The first time I tried Plaquenil it took about a week to ten days of 200-400mg per day to lower my immune system and bring on a sinus/ear infection. Ever since then it happens much quicker.
This time around. Six months after I last tried it. The infection symptoms are back with only two 100mg doses in three days.
The other question is, many people are on 400-600mg daily for years without lowered immune system issues. Does this mean my immune system is very weak to begin with?
Thanks
Are their medications specifically for modifying cytokines?
Like all of us, the way forward is highly individual. It sounds like you likely have some infections still lurking, some autoimmune issues, and possibly an underactive immune system. Or, as my doctor puts it, a dysfunctional immune system.hi @Learner1 ive had high ana levels on and off and there is a history of autoimmune issues in my family. ive also seen benefit from other things that regulate the immune system.
those things coupled with the fact i was going nowhere by doing nothing, my dr said he was willing to prescribe it to see what happened. it definately makes a difference. i feel much of the overwhelming exhaustion lift within hours.
i have previously posted about it before. maybe i just have to get the dosing right or look at an immune modulator that works in a different way, but there is definately something here worth looking into. fo me at least. just not sure what the next move is.
im curious as to why small doses seem to knock down my immune system so quick and why it appears to be increasing.
not sure about immunoglobulins or nk issues. at a guess it would appear i have some cytokine issues, its also been suggested by drs before, though no tests were done to confirm it. i dont think mold is a problem.
infection, well who knows. that many different ones and tests for them its impossible to say for sure. ive felt a big improvement from certain abx before but it was most likely from the immune modulating and anti inflammatory effects.
ive taken high doses of other anti virals and anti bacterials without any effect. ive tested positive to past infection for ebv, cmv etc like most and also to mycoplasma and equivocal to borrelia but was told its insignificant.
my illness began with a bout of the worst stomach cramps ive ever had. was 17 and parents took me to hospital twice fearing appendicitis. stomach seems to function normally now but diet, probiotics, sometimes using my bowels, yogurt do have a positive effect on how i feel, so it seems to support the theory there is an issue with the immune system within the gut. enterovirus maybe?
I, too, have seen a number of doctors that were useless, couldn't find any problems, couldn't read the labs I had, and didn't know what to do for me even though they could see I was quite ill.mate over 20 years i must have seen at least 50 different so called professionals. if they havent found any hidden infection or anything else yet then i have zero confidence in anyone im aware of finding something now. and if they do the previous 50+ "professionals" shouldnt have a medical license
there is no doubt there exists something that can be found, maybe we dont have the tests or knowledge available to find it yet, however you would never know because every dr i see pretty much does the same standard list of tests that ive told them ive had done a thousand times before then throw their hands up and say they have no more ideas when the results come back "normal"
just about any test ive had outside of the norm has been my idea and ive usually had to dr shop and even then beg for it to be done. in the case of a certain test that is effective than the regular test to see if there is a persistant ebv infection, there is only one lab in australia that does it, but they dont offer the test to the public, its for researchers only.
there are many tests i read about on the forums here that i still havent been able to get done. its a joke.
who is the expert you seen?