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Lithium & antidepressants better than ARVs for XMRV, & more

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I remember an article someone wrote back in the 50s/60/s about off label use of an Epilepsy drug (Dilantin) - for mood disorders. It was trialled in prisons for eg (double blind, placebo etc) and was incredibly successful as a mood balancer in helping distressed and violent inmates regain their emotional equilibrium (they reported being happy!), but no one was interested, including the manufacturers, presumably because more money was to be made for everyone from the newer antidepressants/valium etc - which seemed to be less effective.

I tried Dilantin at one point. It was moderately effective. Lamictal was much better for me.

A problem with Dilantin is that it causes "pseudo-lymphoma" in some people, including me. This sometimes seems to progress to actual lymphoma which (as I realized later) is associated with ME/CFS.

So I'm not sure that Dilantin is a good choice for us.

Best, Lisa
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Omega 6 oils

The thing about GLA and the other very long chain fatty acids found in oils like evening primrose oil, black currant, and borage is that they are already in the usable form that our body needs.

I have read that people with ME/CFS are low in the enzymes that the body uses to convert the typical Omega 6 oils in food into the usable forms. So by taking EPO and etc, we are giving the body a hand by requiring it to work less.

I've been taking 4500 mg of Fish oil and 3900 mg of EPO for years. I figured out the balance that works for me by trial and error. It may be different for other people. Maybe it depends on your diet.

One note for mold sensitive people is that I have found some brands of EPO seem to have been made out of moldy seeds. I had to try several brands to find a good one. Also, many brands of black currant and borage oil seem to be old and musty. Freshness is important because these oils spoil easily. I trust Udo's oil to be fresh because he cares a lot about freshness.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Fore, Dan, others:

How do you know when you're getting too much or two little of those different oils?

Are there specific symptoms you experienced or are looking for?

Has the dose changed over time (e.g. as you've been first addressing the issue vs. maintaining)?

Thanks, Lisa
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Rats, I can't remember what symptoms I was watching to determine the correct dosage of the EPO and fish oil. It was so long ago. It probably had something to do with skin and hair and general well-being.

I've been taking the same dose for a long time. Occasionally I will take extra if I'm in a bad place and feeling really poisoned.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Hi Fore.

I didn't know that you found it especially helpful when feeling poisoned. That makes me even more eager to try it.

Then I guess I should just try your dose. It seems like you're taking about 7 capsules of EPO (500 mg) and 4 capsules of fish oil (1000 mg). Though your numbers are awfully precise! Maybe you titrated really carefully.

I only have black currant seed oil, which has more GLA. That would be about five capsules. And 4000 mg is just a little bit less than a teaspoon of fish oil, so I'll try that as well.

That's a lot of oil! It will be interesting to see if it makes a difference.

Thanks for your help.

Best, Lisa
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
EFAs

Slaya, I take 3 capsules a day of EPO that are 1300 mg each, and nine capsules of Eskimo-3 fish oil, which add up to 4500 mg. That was the maximum recommended dose on the fish oil package. One reason I like them when trying to detox poisons is that they keep the digestive system moving along. It's less shocking to your digestive system if you work up to the max dose gradually.
 

aquariusgirl

Senior Member
Messages
1,732
Is it worth taking fatty acids w/out taking carnitine..? I thought that was what moved fats into the mitochondria.
 

CindyWillis

Senior Member
Messages
116
I've done really badly on antidepressants. Made me much worse and for a very long time, every time. Tried amittrip, prozac and others. This is something I would avoid unless I had no other choice (and only try ones that I hadn't before). Fortunerly I am not depressed and only tried them previously due to be "sold" them as sleep aids, painkillers etc. They didn't even work for that.

XMRV+

I have heard that Prozac makes you very nervous so it seems that it wouldn't help. I don't know about the others but I took Paxil which puts you to sleep and calms down the nervous system and it really helped me as a totally type A person. I am sure everyone is different and maybe you already tried Paxil and it didn't work for you but I thought I would send in my two cents.
 

CindyWillis

Senior Member
Messages
116
I am just hoping we can get off of Amitriptyline when the time comes. An ex girlfriend has CFS as well and has been on antidepressants for 4 years. She can't stop taking them, because she gets all kind of mental issues. She feels delusional for example. She didn't have mental issues before taking the anti-depressant...

Just curious whether she gradually tries to get off of them or stops them all at once. I understand that a complete stopping without a gradual reduction causes these problems. Maybe she has been trying a gradual approach to stopping them and still has those problems. Just wondering...
 

Jemal

Senior Member
Messages
1,031
I am not sure what antidepressant she is taking and in what dosage.

Myself, I am taking 10mg Amitriptyline. So hopefully I can easily stop taking it when the time comes.