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If CFS is an autoimmune disease, could boosting the immune system be harmful?

Charles555nc

Senior Member
Messages
572
I had symptoms of MS and brain damage after taking selenium and melatonin....be very careful. Insightful first post.
 

SaraM

Senior Member
Messages
526
Anti-inflammatories help me with muscle pain. I don't know if Spironolactone works against inflammation, but it is the best thing I have tried for shooting muscle pain. I have higher than normal Aldosterone ( I dont know if it causes inflammation), and high estrogen(this one causes inflammation) with very low progesterone level.I am also taking Prometrium(progesterone), Pregnenolone, and Fred's supplements(helps with numbness and burning pain).

http://www.patient.co.uk/medicine/Spironolactone.htm
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Anti-inflammatories help me with muscle pain. I don't know if Spironolactone works against inflammation, but it is the best thing I have tried for shooting muscle pain. I have higher than normal Aldosterone ( I dont know if it causes inflammation), and high estrogen(this one causes inflammation) with very low progesterone level.I am also taking Prometrium(progesterone), Pregnenolone, and Fred's supplements(helps with numbness and burning pain).

http://www.patient.co.uk/medicine/Spironolactone.htm

Hi SaraM,

Spironolactone can have interactions with ibuprofen and affect/lower hormones. I found out this investigating it before taking any and decide it conflicted too much with meds I was taking and some of my major problems. for me to take it.

A folate deficiency, natural, induced or paradoxical, can cause inflamatory muscle pain that responds sometimes to anti-inflmmatories.

At the moment I'm writing this I don't know what programs, if any, you are pursuing, so these are just possibilities to consider.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I had symptoms of MS and brain damage after taking selenium and melatonin....be very careful. Insightful first post.

Yet for some, me for instance, Melatonin has had no negative effects, but has helped my sleep. We are all so different.

Rather than being cautious, i would promote being educated and informed - as much as you can be, and then taking some calculated risks. The reason i say this is that i dont see myself or many other people getting better without some kind of intervention. So, we are in a position where really, we have to take some risks, in order to have a chance of getting better.
I think there are plenty of low risk things you can do to start with, and through educating yourself you can lower the risk further. If the low risk things dont work, you have to then consider taking slightly higher risks in order to have a chance of getting better.
I am still working through the low to medium risk things at the moment, and im not saying i will get a little nervous if the options available to me in a years time are medium risk but the alternative is not very appealing from where i am sitting.


Its not easy.

Regarding the core topic, I think its right to educate yourself as much as you can, but its complex, so this area in particular is even more difficult.
 

SaraM

Senior Member
Messages
526
Hi SaraM,

Spironolactone can have interactions with ibuprofen and affect/lower hormones. I found out this investigating it before taking any and decide it conflicted too much with meds I was taking and some of my major problems. for me to take it.

A folate deficiency, natural, induced or paradoxical, can cause inflamatory muscle pain that responds sometimes to anti-inflmmatories.

At the moment I'm writing this I don't know what programs, if any, you are pursuing, so these are just possibilities to consider.

Hi Freddd, thanks for the input.Aside from hormones, I am on a protocol very similar to yours, only vitamins and minerals with no meds, although I have tried pain killers and other stuff here and there with minimal success.
 

SaraM

Senior Member
Messages
526
dhea has been shown to be helpful in lupus, maybe because it can help lower IL6 proinflammatory cytokine

Heapsreal, do you think it is wise one with low Dhea level, normal testosterone, and high estrogen takes Dhea supplement, while Dhea converts to estrogen and testosterone?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd, thanks for the input.Aside from hormones, I am on a protocol very similar to yours, only vitamins and minerals with no meds, although I have tried pain killers and other stuff here and there with minimal success.

Hi Sarah,

Are you taking folic acid, folinic acid, NAC, gltuathione, whey, and maybe just vegetables and having the induced folate deficieny symptoms? That is the question. How much Metafolin are you taking?
 

SaraM

Senior Member
Messages
526
Hi Sarah,

Are you taking folic acid, folinic acid, NAC, gltuathione, whey, and maybe just vegetables and having the induced folate deficieny symptoms? That is the question. How much Metafolin are you taking?

None of them, except a very small amount of folic acid in my iron supplement which I will discontinue very soon. My white blood cell folate(I do not know what Spectracell lab really meant by "folate") was high normal 3 years ago. I am now taking 800 mcg Solgar folate in the morning, and 400 mcg in my Thorne research multi.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
endomeister thats a great table, it fits for me--milk thistle, quercetin, and tea are a few of my main staples for years, although quit Q for awhile because seemed to lower b/p more and its already low. The stuff on other side of chart a lot of it has not agreed with me so stopped using it like any mushrooms or echinacea, i know i do not want to raise immune system, only time got a cold was when tried prednisone in last like 7 years. wanted to like dandelion because supposed to be good for yr kidneys and I love taste of the tea but always feel bad after i have it, same with garlic. I do take dmg for gut and hookd on chocolate but perhaps should rethink the licorice.
Would you mind sharing what protocol you have tailored for yourself? I have some issues in common with you.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Heapsreal, do you think it is wise one with low Dhea level, normal testosterone, and high estrogen takes Dhea supplement, while Dhea converts to estrogen and testosterone?

i am using an aromatising inhibitor called arimidex which stops testosterone converting to estrogen, doing this also has helped increase my low free testosterone levels even though my total testosterone is fine. This treatment is used in male hrt and antiaging medicine. Im hoping that increasing dhea to normal will improve immune function and improve sleep through lowering il6 cytokines as well as global symptom improvement. cheers!!!
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
heapsreal could you please give more info on how you take yr hormone, I never heard of that inhibitor thang before, intriguing. is there a website......?
 

SaraM

Senior Member
Messages
526
i am using an aromatising inhibitor called arimidex which stops testosterone converting to estrogen, doing this also has helped increase my low free testosterone levels even though my total testosterone is fine. This treatment is used in male hrt and antiaging medicine. Im hoping that increasing dhea to normal will improve immune function and improve sleep through lowering il6 cytokines as well as global symptom improvement. cheers!!!

I tried 4.rx.com for arimidex, but their shipping was terrible.After waiting for a month, I had to cancel the order.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
yes of late 4rxhas been extra slow of late, i have had an order for arimidex in since october, they did say they were having problems with suppliers, but also havent returned emails but they havent taken money either which is good, but they are the best priced, i have a friend who has helped me out with arimidex in short term otherwise its very expensive
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
heapsreal could you please give more info on how you take yr hormone, I never heard of that inhibitor thang before, intriguing. is there a website......?

at the moment i take dhea as a tablet, not using pregnenolone or progesterone but did use them as a cream as they are better absorbed this way then tablets. arimidex is a drug used for estrogen dependent breast cancer and off label in men for hrt with high e2/estrogen and normally testosterone treatment. Men use much less doses then females with breast cancer, typical hrt doses are half mg which is half a pill taken twice a week, maybe three times. We dont want estrogen too low either as this can cause and increasse joint pains as well as other symptoms, testing before and after are important. cheers!
 

SaraM

Senior Member
Messages
526
yes of late 4rxhas been extra slow of late, i have had an order for arimidex in since october, they did say they were having problems with suppliers, but also havent returned emails but they havent taken money either which is good, but they are the best priced, i have a friend who has helped me out with arimidex in short term otherwise its very expensive

I think alldaychemist.com has a better price for arimidex, and I have never had any problem with them.
 
Messages
53
When I take any immune boosting supps I start to feel much worse. For instance, I was put on a protocol of Vit D3, LDN, fish oil, coq10, and b12 by Dr. Klimas. The D3 and LDN made me feel especially bad. I do much better without them. This is funny however, because my D3 level is tested as well below ideal. We even talked about getting IV D3 therapy to return it to good levels. If only there was a miracle immune system fix. Maybe Ampligen? That stuff might just be a hoax though.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
When I take any immune boosting supps I start to feel much worse. For instance, I was put on a protocol of Vit D3, LDN, fish oil, coq10, and b12 by Dr. Klimas. The D3 and LDN made me feel especially bad. I do much better without them. This is funny however, because my D3 level is tested as well below ideal. We even talked about getting IV D3 therapy to return it to good levels. If only there was a miracle immune system fix. Maybe Ampligen? That stuff might just be a hoax though.

Hi KMS,

Here is the problem. When you take the b12, if it works well, you could fimnd yourself feeling much worse very quickly. The reason, as a sinlge one, is indeuce ddeficiency. The catch is it can be any one or 10 of a couple of dozen items. While potassium and folate lead it off, there are bunch of others. One can get established on the mb12/adb12/metafolin and all the basics, get healing, build the foundartions for the immune system and then with thaqt founbdation estableished, the other things will do better, if needed at all after ghetting the foundations built. Read http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basicsm to see what I mean about getting the basics built.
 

Adster

Senior Member
Messages
600
Location
Australia
Freddd I really think the induced deficiency is a problem many people run into. It makes sense. I'm currently wondering if that in some people the mineral transport system is so poorly functioning that it can never keep up with the requirements of turning on methylation and healing so crash cycle will just keep happening. Just a thought.