Immune suppressants?

[xrayspex]

Have many of you tried immune suppressants, either prescription or natural? If so any decrease of CFS symptoms?

 

[LisaGoddard]

I would be really interested to know of any answers to this as I can't get my immune system to calm down. I have tried immune modulators (green tea, imunovir, lactoferrin..) but they stimulate it. I have tried aspirin (got bleeding problems) and ibuprofen (got rebound inflammation). I may have had some positive results with the nsaid celecoxib but only had 10 tablets so too short treatment to really tell.
Hope someone knows some answers..

 

[elbosque]

I didn't have any positive outcomes on imunovir. I take substantial amounts ibuprofin for pain and inflamation. But I don't think that impacts the immune system. I have now been on this compounded form of vitamin B12 which I injected once per week which can make me sick for a day but then gives me 3-5 days of feeling a lot better. Now my doctor has me injecting it once every two weeks and I really notice the difference in both how I feel more fluish symptoms and increased mental and physical fatigue. So it must be doing something to my immune system. He told me that he and other doctors suspect that some people with ME/CFS have reduced B12 levels in their brain. My B12 levels in my blood were fine on all the tests. But according to my doctor, sufficient B12 levels in blood do not automatically translate to sufficient B12 levels in the brain. That said, I have not had any immune tests done to prove that these B12 injections have modulated my immune system. I just don't feel the symptoms that I usually have.

 

[Sushi]

... I take substantial amounts ibuprofin for pain and inflamation. But I don't think that impacts the immune system.

My doc said that ibuprofin does suppress the immune system, but not in the best way for those of us with an over-activated immune system. He didn't want me to take it even though it does reduce inflammation. Tough though, as there are not a lot of good choices here.

Sushi

 

[heapsreal]

Curcumin is a herb/spice that has anti-inflammatory properties.
Lots of antioxidants.
Otherwise look into NMDA antagonists, there have been a few threads on this of late here, many are drugs, some easier to come by then others.
Let us all knw if you find something really helpful though.

cheers!!!

 

[Adster]

I think curcumin shifts the immune system toward Th2, so maybe worth being a bit careful with that one as it has been suggested many with this illness are Th2 biased. Curcumin is good for MS though, I think.

 

[LisaGoddard]

I have tried cucurmin a few times and each time it made me feel really, horribly fluey sick. I have been puzzled by that and I have been thinking perhaps I just needed to persist with it. But perhaps the problems is the Th2 shift.

 

[knackers323]

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

 

[Learner1]

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

Just curious... what data do you have to indicate this is an appropriate treatment? What problem are you trying to solve?

Do you have autoimmune issues? Low or high immunoglobulins? NK cell issues? Cytokine issues? Viral or bacterial infections? Mold?

 

[knackers323]

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?

 

[Jesse2233]

Hey @knackers323 which immune suppressors have helped you?

 

[knackers323]

Hello @Jesse2233

Think the only two that would qualify as actual immune suppressants would be Plaquenil and levamisole. Both help. Plaquenil probably moreso. I only need a few drops of levamisole.

Anything more than a very small dose of these seems to be too much. Wonder if that indicates my immune system is weak?

The other things that ive seen benefit from would probably fall into the category of immune modulators effecting cytokines, inflammation etc.

Certain Probiotics, yogurt, abx, crushed shells of a Probiotic strain. The product is marketed as an immune modulator called russian immune something. Ive posted on it before.

Again I felt much better within hours but had to keep redosing.

There are other things ive found that help but probably for different reasons. B1, whey powder etc. If I remember any other immune related things ill add them.

Just remembered that I used to take prednisone for a while. 50mg a day. Think that is a fairly sizeable dose. It enabled me to struggle through a job for a couple of years. The dr said anyone would feel better onthat dose so not sure what to make if it.

I actually recently had a cortisone injection for an injured shoulder. I felt much better for about five days

Any other questions just ask mate

 

[Jesse2233]

Thanks man, what sort of cytokine modifiers?

 

[knackers323]

None that are prescribed as such but id say thats at least part of what the yogurt, macrolide abx, Probiotics etc. are doing. I could be wrong though.

Are their medications specifically for modifying cytokines?

 

[Jesse2233]

Are their medications specifically for modifying cytokines?

Yea there's a whole class of drugs for autoimmune conditions that target TNFa (Humira, Enbrel, Remicade), IL-6 (Actemra), IL-1 (Anakinra), and IL-17 (Consystex). IVIG can also lower proinflammatory cytokines (it's lowered IL-6 and IFNy for me), and there's a Life Extension supplement called Cytokine Suppress that claims to lower cytokines using mung bean extract and ECGG.

Here's an extensive list: http://www.nature.com/nrd/journal/v9/n9/fig_tab/nrd2805_T1.html?foxtrotcallback=true

 

[Learner1]

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?

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.

Getting the gut healthy, having adequate nutrients, and supporting the endocrine system are foundations for help.

Figuring out what infections you might still have and how well your immune system functions is critical.

I spent a year wondering if my labs were right as several MDs dismissed them before finally seeing an expert who confirmed that I had them, found EBV, and figured out how compromised my immune system was.

I have both an underactive and overactive immune system, so suppressing my immune system would be the last thing I'd want to do, especially when I'm at risk for cancer, both from EBV and from my previous cancer.

I suspect you need more sleuthing to come up with a game plan to move you forward.

 

[knackers323]

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?

 

[Learner1]

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?

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.

Yes, you do need the right tests to actually find problems. On this journey, I've had my blood sent to Germany and the UK, so I imagine it could be sent from Australia as well, as well as to the US. Once we knew what problems to solve, it became easier to get treatment.

I saw Dr. Kaufman, who was at the Open Medicine Clinic and now is in his own practice. That's probably a little far for you, but I was very impressed with Neil McGregor and Chris Armstrong at the OMF Symposium, so you might do well to track down the clinicians they work with. I believe they're in Melbourne??