to frankie78 and lisa

Discussion in 'Fibromyalgia Main Forum' started by Catseye, Apr 26, 2007.

  1. Catseye

    Catseye Member

    Lisa, actually I think you can attribute it to the Coenzyme A! That's why I'm so excited about it, it's really my new "wonder drug" supp. I'm taking it 3 times a day until I get my next order, then I'll probably up it to 4 and see if I improve even further. Isn't it great to get something that has unmistakable, quick and dramatic benefits??!!

    frankie, the free form aminos are easily absorbable forms of amino acids. Your body, if it is healthy and your GI tract is functioning well, will break down protein into amino acids. I eat a good bit of protein but it's apparent to me that I just can't break it down like I'm supposed to. So I buy free form acids and take them all day long. They are ready for the body to use and don't require digestion. They are best absorbed on an empty stomach and they have never given me the slightest stomach discomfort. I can even take them in the middle of the night when I'm not feeling too good and I feel better in minutes. Free form aminos aren't exactly in the myhill protocol. It calls for acetyl l carnitine, an amino acid, and it usually isn't in the free form amino acid pills so I take it (500 mg 3x per day) separately.

    Actually, there are alot of amino acids I take separately in addition to the free form aminos. If you look at my "what worked for me" post, I'm on page 3. It's long but use the "find" function in your computer for "amino" and you should find where I list them and the dosages. Also, a post called "neurotransmitter precursors" I did April 14 will show the ones for the neurotransmitters that will help with brain fog and depression.

    I'm going to be taking about 20 grams per day of free form aminos. They usually come in 1 gram pills, so I'll take 1 or 2 at a time every hour or so, or when I remember - I still have cognitive problems! I've found that when I'm feeling good, I forget to take alot of stuff and then when I start to feel like I'm "missing something", then I recollect what I've taken during the day and decide what I'm short on. And whenever I leave the house, I have a hefty supply of pills in my purse.

    Sorry this is somewhat disjointed, I'm currently out of free form aminos! I hope they arrive tomorrow - my brain is shutting down!

    karen
  2. deliarose

    deliarose New Member

    wot brand of free form aminos do u use?
  3. Waynesrhythm

    Waynesrhythm Member

    Hi Karen,

    I've seen you reference your "what worked for me" post about three times, but have been able to locate it each time I tried. Not sure what I'm doing wrong, but realize I need a little help. Could you be more specifc? Perhaps a date or the exact name of the post? You may have done this, but I've just missed it.

    Thanks much.

    Regards, Wayne
  4. Catseye

    Catseye Member

    Hi deliarose, I'm currently using Source Naturals Amino Day for the pills and I get alot from the Daily Energy Enfusion powder, too. I reallly depend on them and take alot of them.

    Wayne, look at the top of the message board where there are a few permanent threads in blue. Go to "what worked for me" and then go all the way to the bottom of that first page where you can select other pages. Go to 3 and I'm somewhere in the middle. It's from December.

    You can also use the search function. Mine's called "supplements only, had help c, been ill 4 years".

    Boy, I'm really in need of my aminos now. I hope they come in today. These things are crucial to my brain functioning.

    see ya!

    karen
  5. deliarose

    deliarose New Member

    much appreciated.
  6. frankie78

    frankie78 New Member

    thank you!!!

    frankie
  7. Slayadragon

    Slayadragon New Member

    Hi Karen,

    Upon reflection, everything that you have recommended has (either before I came on this board or after) has helped me to a significant extent. And it's really rewarding to be able to do things that make me feel better right away with no downside!

    The last update on your progress that I've read (on the "what worked for me" thread) was from early March. How are you doing these days?

    Thanks much for all your great suggestions!

    Best, Lisa
  8. Waynesrhythm

    Waynesrhythm Member

    Hi Karen,

    I'm off to get some amino acids right now -- before I forget.

    Thanks much.

    Regards, Wayne
  9. Catseye

    Catseye Member

    Actually, my progress has increased exponentially with the Coenzyme A. That is the brand name, carla, made by Coenzyme Technologies. After Lisa's post about taking 2, I decided to take 4 pills today and it made me able to go out to dinner and sit around the pool talking until 10:30, unheard of before now. And I've made all day plans for Sunday to go out of town to a great fish place and then we're coming back to the beach at Sosua Bay. Obviously, I got my package of supplements I was expecting today.

    The first things I opened and took: free form amino acids, Coenzyme A (even though I still had some at home but I had ordered another bottle), Daily Energy Enfusion powder, CoQ10 and Electrolyte Stamina. I felt tons better within minutes. I'm going to the gym on Monday and I think I'll be able to work on some flab. You get pretty flabby after 4 years of cfs. I want to work on my butt some, since I plan to spend lots of time at the beach.

    It's too long a story for here, but just FYI, I am getting divorced and my newfound freedom is just wonderful. I feel better right now than I ever have in my life. I plan on being totally back to normal one day. I can't say how long it will take to build the body's reserves back up, but I sure feel good right now. I'm going to do it slowly and carefully to make sure I never crash again.

    It's really funny, Lisa, verybody is calling me "super Karen" or the "new Karen" and it's just amazing. I am back into caring about my appearance lately, clothes and hair and face, and just today, some guy stopped on the street and looked at me and said "you are really beautiful" and then kept going. It really blew me away. That's never happened to me before in my whole life. What a lift! I guess I should post a picture of me but you wouldn't get the whole story unless you could see the tired, sick, old-looking thing I had been for the past few years. So what I'm doing is really doing the trick, but I am literally popping pills all day long. And another thing I've been doing lately that I didn't feel good enough to do for 4 years: listen to music! I just bought a bunch of stuff at iTunes and burned 4 CDs. Great fun!

    My top recommendations: coq10, coenzyme A, free form amino acids, daily energy enfusion and lots of veggies.

    Yes, Wayne, get those aminos! They are worth their weight in gold. And take enough - try one or two pills (about 1 gram each usually ) every hour or two and see what happens; empty stomach is best.

    It's late so I'm going to bed. I can't remember the last time I was up until 11:00. I certainly won't make a habit of it but it's part of the progress.

    see ya!

    the new karen

    Oh, one more thing - I can't stop smiling all the time![This Message was Edited on 04/27/2007]
  10. Slayadragon

    Slayadragon New Member

    Hi Karen,

    Wow, this is terrific! I am so happy for you.

    I hope you don't mind, but I'm going to take the liberty of starting a new thead directing people to look at this post.

    It's really exciting when anyone has a big increase in functioning, and certainly gives many of us ideas for new things we can try.

    I think the supplements that are working for you have been helpful for me as well, and am ordering the amino acids to try as well. Thanks for the suggestions!

    Please continue to write back and let us know how you are doing.

    Good for you!
  11. Catseye

    Catseye Member

    Thank you, Lisa, how flattering! Actually, I just got home at 10:00 tonight. My first night out on the town in 4 1/2 years! I went to a club on the beach in Cabarete with my friend Maurice who has seen me at my worst. He came and took care of me several nights last year when I was alone and needed someone in the house with me. I got all decked out and we just sat and talked and ate and looked around. It was great to be out! I'm a bit tired, but I'm not exhausted and I still feel good.

    I'm taking 4 coenzyme As per day, now; I'm thinking that has alot to do with this increase in energy and ability to keep it going until late at night. We sat on the beach for about 2 hours and I had to pop some pills - aminos and digestive enzymes, of course; I don't leave home without them. I was even able to drive home! I actually feel totally normal, but I am conscious about my low energy so I don't push it. I can drive and read as much as I want and now I'm starting to be sociable again. I missed out on that the whole last 4 1/2 years. I was too ill to just sit and talk.

    The only thing is, I still can't just sit up straight for more than a few minutes at a time - like maybe 20 or so, depending. It drains my energy really quickly. I have to be able to lean back in a chair that is at least slightly reclining and rest my head; I can't last in a straight backed chair. Then I can sit for a couple of hours. Like where we went tonight, they had couches so I was comfortable. I think it's the muscles in my back and butt needing reconditioning so I'm working on that, very slowly.

    Okay, it's 11 now, I better go to bed. More tomorrow.

    karen
  12. pumpkinpatch

    pumpkinpatch New Member

    Lisa and Karen:

    Wow Karen you are a true inspiration for everyone here and you are right "The New Karen". Going to a bar and beach chatting and just living!!! I guess you would never have imagined the new you 1 year ago.

    Question about the amino complete: Do you think the mega doses we are taking is ok? I'm taking 4 - 3 times per day. My thinking is after 1 to 2 months we won't need some big amounts.

    On a side note: I had lessened my MSM powder dose and was getting sorer and stiffer again so I upped it to 3 tsp. 3 times per day. Really helps.

    Cindy
  13. Catseye

    Catseye Member

    First off, I can't stay out that late yet. I paid for it early this morning. But not too bad, I still say it was worth it. At least now I know my limit right now is dinner and not going out afterwards. I woke up in the middle of the night with what would normally be a "crash". But I'm getting so familiar with my body and the pills and powders, I started in on them when I woke up and this morning I'm okay. This would have really helped me for the past few years and saved me alot of agony if I had known what to do, when I was waking up every night with a horrible crash and simply wanting to die.

    For example, last night when I woke up at around 1:30 am feeling pretty darn bad, I took coq10 100 mg, a coenzyme A pill, free form aminos 2 1-gram pills, a primrose oil capsule, a liver support pill, some Dr. Teitelbaum's Daily Energy Enfusion (about 1/4 scoop), a Krebs Cycle Chelated mineral pill, a vitamin B complex pill and I ate some lentils. I felt better in 30 minutes, but was still exhausted; I was able to go back to sleep, though. Now it's 9:30am and I'm a lot better after breakfast (still more supps, an egg and electrolyte stamina) but I'll still take it easy today. This would have killed me last year or even a month ago.

    My organic acid test said I have issues with carbohydrate and fat metabolism so that's what I'm looking into now. Of course, it took months of experimentation to work out this personal formula but if anyone is crashing, these supplements should be considered. These are the things that your body is lacking in and making you "crash". I know they are in my case because I'm recovering in hours from something that used to take me weeks or months to recover from.

    Cindycor, I wouldn't think tons of free form aminos could hurt anything. To me, it hurts worse not to take them. It's so hard to say what all this megadosing does because since we aren't absorbing and utilizing stuff like a normal, healthy person, maybe most of it is just passing through us or being discarded by the liver without doing anything. It's all trial and error. It's always best to start low and work up. But don't make my mistake: just because you don't get results from a supp you think you need, don't quit using it. Keep on with it and add others. I'm taking TONS of stuff. But it's allowing me to function. I literally pop pills all day long. And I spend alot of money on them. But this is better than lying in bed dying like I did for so long.

    And do the organic acid testing! Did you look at the results I posted? They really gave me alot of good information. I would like to see others use it to see what happens. And about the aminos, I just wouldn't take them all at once; you need to space them out because we don't want to overwhelm the liver with too much of any one thing at once and, also, because I don't think we're storing things properly (like vitamins, minerals and amino acids) for use throughout the day. I've look at alot of bodybuilding websites to see what the big, bulky guys are taking and they are using lots of aminos and ribose, among other things. They are knowledgable about energy and you can get some good tips from them. And thanks for reminding me about my MSM; I hadn't taken it today, yet.

    So the moral of the story is DON'T PUSH IT!!! Obviously, I still have some issues but the improvement is still on a mega level and it's only getting better. I'll stick to the beach and dinner only for awhile.

    I have alot of the methyl donors but I ordered some of the ones Rich suggested that I didn't have and I should have them this week. Then we'll see what THEY do.

    For today, I'm giving myself a pat on the back and counting myself lucky. YOU CAN DO IT, TOO!!!

    karen

    [This Message was Edited on 05/01/2007]
  14. Daisys

    Daisys Member

    This is really inspiring. I have a question, after reading your 'What worked for me' and your bio. You did have treatment for hep c, but it looks like you haven't directly worked with antivirals. Do you feel there is an underlying viral component to your condition? If so, do you feel that your stronger natural defenses are enough in your case?

    I'm doing a lot of what you are doing. I am not in as bad of condition as you started out with. But I definitely have some infection symptoms. Right now, an LLMD is testing to see if I have Lyme disease (I think my issues are more in the viral area than that). I wonder if building my own reserves up enough would be enough to put all the viruses under control, or if I need to aggressively go after the viruses.

    I'd value your input, knowing we're different, and your input would be based on limited knowledge. THanks in advance.

    I'm so happy for you. Thank you for your extensive input on this board.
  15. Catseye

    Catseye Member

    Hi, thanks for the kind words! Actually, the treatment for the hep c was antiviral chemotherapy. It was interferon injections and ribavirin pills. It forces your immune system into maximum overdrive and makes you want to die after awhile. It totally wiped out the hep c. I think I probably have other viruses like Epstein Barr (because I tested positive for the antibodies) and probably some other herpes viruses but after the interferon hell, I'm hypersensitive to drugs and would rather try other things.

    I use a zapper and colloidal silver regularly (for viruses and parasites) and some antimicrobial supps now and then, like olive leaf and grapefruit seed extract. They are all perfectly harmless and don't upset my liver. So after all of these, I'm really not worried about viruses at all. I figure if I get my body working right, it will whoop them if there are any left.

    I also have a bottle of vitalzyme which I'm going to try soon, after some more of the methylation stuff. You can read about it at Dr. Wong's site. Our bodies are dependent on aminos and enzymes for everything and I'm expecting even more good results with the vitalzyme.

    best wishes,

    karen
  16. pumpkinpatch

    pumpkinpatch New Member

    Yes, take it easy today. You are getting really good at listening to your body and seeing what works. It's amazing that you notice such a difference when you take those supplements.

    I definitely spread the vitamins and supplements out during the day. I read that the MSM powder has a 12 hr. lifespan so I take it 3 times a day usually with some food because it can really upset your stomach. WHen I first started it in Nov. I had to start on low dose. Can herx bad on MSM. It kind of numbs the pain and drops from a 7 down to a 3 on pain scale. I know MSM isn't for everyone but it really helps me.

    That's interesting about the body builders. They are big on the aminos, creatine, MSM etc.

    Oh and by the way I still drink my electrolye stamina everyday. I even have my mother and sister on this stuff. My mother is sold on this drink. She notices the energy boost and her chronic coughs have stopped.

    I really think one needs to boost the immune system, get the digestive working better (eliminating candida etc) and regulate sleep patterns. Very important.


    Cindy
    [This Message was Edited on 05/01/2007]
    [This Message was Edited on 05/01/2007]
  17. Daisys

    Daisys Member

    I am looking into the colloidial silver and zapper. One thing at a time, and it feels like there's a parade of stuff waiting it's turn...
  18. Catseye

    Catseye Member

    Oh, I should mention the brand I chose. Source Naturals Wellness Colloidal Silver. I chose based on particle size and what I had read. We know silver kills things. My pool has an ionizer in it instead of chlorine. It uses copper and silver ions to kill the algae and microbes. It's crystal clear and it's nice not having stinky chlorine in a pool.

    And my zapper is a Terminator zapper.

    I wish I had known about these before the chemo. I certainly would have tried them first. Probably would have saved me alot of agony and about $30,000.

    good luck!

    karen
  19. Daisys

    Daisys Member

    I appreciate getting the specifics. It can be a real challenge finding good products.

    I'm going to print out your post so I have it in hand.
  20. Slayadragon

    Slayadragon New Member

    Hi Karen,

    I didn't recall before your having had the Hepatitis C and then having the interferon treatment. No wonder you got so sick.

    My husband has had Hepatitis B since he was a child (maybe since birth). His health status (both in terms of how he's feeling and his liver enzymes) varies over time, but generally speaking he's never really in great shape.

    He has been using Traditional Chinese Medicine (herbs and acupuncture) for two months now and is feeling significantly better. However, he still has a ways to go.

    Are there things that you might suggest?

    Thanks!

    Best, Lisa