anti-androgen med seem to be helping me: spironolactone

[Alesh]

I accept only the kinds of treatment I have a control over myself. I am scared even to take some new drug with a half-life longer than one day so I fully understand your concerns over an implant.

Perhaps it is silly but what if "xmrv is activated by androgens" means that after activation xmrv can be better recognized by the immune system and destroyed?

 

[Rrrr]

yes, taniaaust1, how are you today?????

taniaaust1,

How are you this morning?

June

 

[Rrrr]

well, i am not cured, but i am doing pretty well. i am under a lot of stress and around a lot of family these last 2 wks (read: commotion), and still doing more than usual. but it is not a cure, as i'm still tired all the time. but doing more than usual. however, im only on 25 mg per day. i wonder if i should go up to 50?

How are you doing on the spironalactone? I am asking for your latest update because this afternoon, I have an appt with the primary doctor who.... on last appt... stated "we might try a diuretic, Lasix" to help with the swelling I am experiencing. So...if he is going to go that route, I will ask about spironalactone.

This is a new PCP, only a year, and I do not have the comfort I had with my former, now retired, PCP, nor does the new guy TRUST me as the former doctor did.

I am extremely conservative with medications, having been at this for over 30 years and having been tried on multiple drugs by the rheumatologist and not having success with them but left with a side-effect. So, I am ultra conservative.

This new guy probably thinks the OPPOSITE. I mentioned B12 in the methylcobalamin form and he lectured for a minute about "not spending millions of dollars" on the stuff which has no studies, etc.

I countered...... well, that's another story.

I look forward to your update.

June

 

[taniaaust1]

IntuneJune and rrrr. im okay today.. couldnt get the implant out in the end thou i tried. The area was then weeping this morning (probably due to my trying to get it out last night) but i think its okay now as i washed it with soap and it seems a little better.

i have been feeling a little weak today with more of an effort to do things but maybe it's just due to the stress and worrying if ive had the right thing done or not. I dont know.

My boyfriend has been quite insistant that i dont jump to conclusions and that i keep it in. He says all the studies i showed him about androgens making XMRV grow faster arent proof that it does, he says they arent replication studies and critized the journals they were in as they werent ones he knows. ( im been feeling not happy due to him thinking that even with all i showed him .. there was even a study with something like bihydrotestosterone? i think it was making xmrv worst).

then to top that off he cant understand even why im worried about affecting a virus when it hasnt been proven its in CFS/ME patients. (He wont believe anything until its all actual fact and proven). His reaction is making me feel like crap.. like he dont care how i feel or think. He's far more worried about the mood swings i get then me getting CFS/ME severely (as he has no idea what that is like as he wasnt with me when i was extremely bad).

 

[Rrrr]

thanks for the update, taniassust1. i'm sorry he is a nonbeliever. but it is hard for most to believe in something one can't see.

so will you leave it in or ask yr doc to take it out? it should be an easy procedure to take it out (in the doctor's office) and could save you a lot of trouble later, if the testosterone does indeed stimulate xmrv, which it looks like it does from the anecdotal reports from others on this list.

have you thought about wild mexican yam extract (gel form) for the PMS. i have some friends who got a lot of help from it for horrible PMS.

 

[Jenny]

well, i am not cured, but i am doing pretty well. i am under a lot of stress and around a lot of family these last 2 wks (read: commotion), and still doing more than usual. but it is not a cure, as i'm still tired all the time. but doing more than usual. however, im only on 25 mg per day. i wonder if i should go up to 50?

How are you doing on the spironolactone Rrrr?

Jenny

 

[Rrrr]

thanks for asking, jenny. i had a super bad crash this summer. so i guess teh spironolactone is not a savior! boo hoo. i'm dropping down on the dose now, as my hair is falling out and i'm not sure which med or supplement is causing it. so i'm trying to stop all of them. i don't think it is the spironolactone, as it started falling out before i started that med.

 

[Jenny]

I'm very sorry to hear that Rrrr. I might still try it sometime.

Hope you're feeling a bit better now.

Jenny

 

[Alesh]

Androgen med seems to be helping me

I have been taking oxandrolone for 5 weeks and I feel much better. My interpretation is that oxandrolone has suppresive effect on endogenous testosterone production after some time. Oxandrolone has a relatively short half-life and I don't take it every day. For a few days I also took methandienone. I also try to make anaerobic exercise each day it is possible. I observe a certain degree of testicular atrophy. Before I started to take oxandrolone I was completely homebound with great problems with balance, some degree of ataxia, all pervasive brainfog, confusion and permanent localized headache. I know that almost surely deterioration will come again but now I am almost sure there is a crucial connection between my ME and androgens because I took AAS two years ago and similar marked improvement also occured so it seems to me it can't be just coincidence. However, two years ago I thought the presence of AAS in blood and tissues was helping me but now I believe it is the lack of them that helps me. It is also possible that high level of androgens activates XMRV, which is then more easily recognised by the immune system.

 

[Alesh]

It must be XMRV or something sensitive to testosterone. Now, I have reversibly partially chemically castrated myself by oxandrolone and methandienone and the improvement of my ME is substantial, perhaps even dramatic. I can still feel there is the "flu in my head" but it is much weaker.

 

[RivkaRivka]

hi, the fact that your ME is much improved is wonderful!! tell us more!!

and what do you mean by this: "Now, I have reversibly partially chemically castrated myself"

 

[Alesh]

Hi, if one takes supraphysiological doses of testosterone or its synthetic analogues like anabolic steroids various physiological mechanisms of negative feedback cause that the body ceases to produce its own testosterone. This mechanism is clinically used by means of goserelin, according to wiki:

http://en.wikipedia.org/wiki/Goserelin

I was mainly using anabolic steroids with short half-life, i.e., oxandrolone and methandienone for about 6-7 weeks and each day I didn't take it I felt certain improvement, now I stopped to take it completely and I feel even better, I observe a certain degree of testicular atrophy and almost complete loss of libido.

After more than 12 years of cycles of improvement and deterioration I doubt that this method will lead to complete recovery but I would think it is quite improbable that what I observe is a mere coincidence. It seems to me the connection between testosterone and my ME is highly significant and it is what one should expect if the connection between XMRV and ME is real.

 

[Rrrr]

for reasons i won't go into (other health related reasons), i had to stop the spironolactone a few months ago. also, it seemed to stop working when i got a relapse. but now i'm back on the spironolactone and i'm immediately feeling better on just 12.5 mg per day.

so i think it does not prevent relapses, but does give me more energy and stamina.

reminder: it is an anti-androgen. and xmrv is stimulated by androgens.

has anyone else tried it in the last few months?

 

[pcmenten]

Rrrr, you are a genius. Spironolactone. Good catch!