A "treatment" that helped a friend

Discussion in 'Fibromyalgia Main Forum' started by DemonFairy, Sep 5, 2009.

  1. DemonFairy

    DemonFairy New Member

    I recently got back in touch with a childhood friend on Facebook. I haven't seen her since we were about 16 or 17 and we're 45 now. After catching up on spouses/partners/kids/pets, we started talking about illness. She told me that she'd had Fibro/CFS, which shocked me because she now has a toddler (oh man, just taking care of pets is enough for me - I couldn't imagine being responsible for an endless ball of energy 24/7) and seems to be doing just fine. So, I asked her what helped her. I'm going to quote her because I haven't tried these supplements yet. I can barely afford food right now, and even then, it's with the help of my parents. So, unfortunately, I'm afraid to spend extra money on something that may not help me. I'm hoping that maybe with the next Amazon g/c I earn, I'll be able to buy a couple months' worth. Anywho, take this for what it's worth to you. She says that she now feels 95% normal and that when she's tired, she's not sure if it's the FM or if it's just being the mom of a toddler. I'm guessing that if she's not sure, then it's probably just regular ol' mom tiredness. FM/CFS fatigue is pretty all-encompassing usually and the only thing most people would mistake it for would be the flu or mono, or something like that.

    "I took the Enada (NADH) 2 times per day on an empty stomach at least 1/2 hour before eating. I took the magnesium 2x per day with meals. I think they both helped a lot...I would say the Magnesium helped my pain and the Enada REALLY helped my energy. I also took a multi-vit and A LOT of other things (at one point taking 18 supplements a day) like coQ-10 (really expensive) and other things...but I felt the mag and Enada were both something I could "feel" helped...never felt anything else did much good."

    So, here is what helped a friend. It won't cost you your life's savings and I even think PH sells everything, so I'm totally on-topic and not questioning anyone else's magical cure. I'm sure some of you have tried this exact combination of supplements - did it help you? I know that I've felt better since I started drinking more grapefruit juice (it also helps my pain meds go further as a potentiator, plus the Simply Juice brand of white gf juice actually tastes good, unlike the Ocean Spray stuff that tastes skunky, blech) and that would be more magnesium than I normally get. Maybe if I just add the NADH, I'll feel better.
  2. DemonFairy

    DemonFairy New Member

    No one has tried this? No one has tried it and felt better...or worse? No one wants to try it? It doesn't cost 20k, so it isn't as interesting a "cure"? Everyone just wants to ignore me because I'm skeptical about an expensive cure that a doctor won't share with the medical community because he doesn't want "too many" patients or doesn't want to concentrate only on curing just little ol' us? He wants to work on all sorts of patients, instead of curing a whole community of sick people.

    Hey, has anyone contacted Laura Hillenbrand? I'm sure she could afford the expensive cure...and if Laura Hillenbrand was cured, I, for one, would be a huge believer. I still couldn't afford the cure, but I would be thrilled if Laura Hillenbrand was cured, because she's been through hell.

    Whatever. Eventually, I'll try what helped my friend. I've already tried the no artificial sweeteners/no MSG "cure". I've always felt sick from MSG, so I've avoided it for the last 20+ years. Last summer I decided to try giving up artificial sweeteners to see if it made a difference in how I felt. I figured that going through that for over a year was enough of a trial - it didn't make any difference to me. I'll still avoid aspartame because I've read some crazy bad things about it. I've tried Stevia and am not crazy about the flavor and expense, although I'm sure as soon as it's more widely available (and that's already been happening in the past few months), the price will come down. Hopefully, it'll then be used in products instead of the artificial sweeteners. Right now, it only seems to be something you can add in yourself versus getting drinks that use it as a sweetener.

    It's funny that more people comment when I'm not giving out simple info that helped a friend feel 95% better. Weird, that. Oh well, I'm not going away. I've been around, off & on, for almost 6 years...and I'm stubborn. If NADH cures me, I'll blather on and on about it.
  3. smadavid

    smadavid New Member

    I haven't tried NADH, but I will say that Magnesium has been a great help. It doesn't seem to reduce my levels of fatigue directly, but it does help me relax, reduces muscle pain, and improves the quality of sleep. I buy it in powder form (Peter Gillham's Natural Calm) and make a hot drink out of it.
  4. HarleyRidingGal

    HarleyRidingGal New Member

    I was reading your post and had a question for you regarding the grapefruit juice.

    You mentioned that it helped your pain meds go further and I was wondering if you could explain that part to me. Does it help them in a digestive way? Or does it help to lengthen their effectiveness for you? And are you talking about the standard kinds of pain medication ( i.e NSAIDs, opiates, etc.)?

    I love grapefruit juice but have trouble because of all the natural acid in it. I totally agree with you that Ocean Spray leaves a terrible aftertaste. You're right...blech, indeed!

    I don't think I've seen the Simply Juice brand. Just orange juice and lemonade. I'll have to search for it the next time I'm at the market.

    Unfortunately, I live in a small town and the nearest natural foods place is too far to drive or I'm sure I could find all kinds of things.

    No matter what someone does and what kind of treatments they do, it's so encouraging to hear about someone with ths DD doing better or at least are at some type of functional level.

    I'm glad to hear about your friend. That's awesome for her.


  5. romalaw

    romalaw Member

    Demonfairy, I have been taking NADH for 7 years, it is one of the essentials in my treatment protocol. I have had CFS for 11 years. I tried it early on in my illness but didn't notice any improvement. I tried it again at the urging of Dr. Conley 7 years ago and I find it to be very effective for improving my energy and cognitive functioning. I take 10 mg on an empty stomach in the morning. I have tried on 2-3 occasions to discontinue it and notice the effects within the week. My energy level is lower and I have increased cognitive difficulties.

    I wanted to provide this testimonial because I appreciate your taking the time to post about a supplement that can be helpful in treating the symptoms of this illness. As we know, not every treatment works for everyone. But I would say it is worth trying, and if haven't tried it in a few years, it's worth trying again. My experience has been that different treatments work at different stages of this illness, so I'm continually tweaking me protocol, discontinuing tx that no longer is effective and trying new ones. High doses of magnesium along with malic acid are also very effective for me.

    Thanks for your helpful information.
    [This Message was Edited on 09/10/2009]
  6. AuntTammie

    AuntTammie New Member

    haven't tried NADH, did read about it quite some time ago and cannot rememebr now why I did not try it, but I do rememebr that it soudned promising....I appreciate that you posted this, but did not respond sooner, bc I am not doing well enough to spend much time on here or to try to write coherently as much lately
  7. debshomeed

    debshomeed New Member

    For details have a look at my reply to the Nadh thread on the Alternative board for my experiences with it. I was prescribed this by my now ex-doctor.

    I've been told that it is best to take the subliginal lozenges for direct absorption into the blood stream.

    Even though Nadh gave me an energy boost it also made me ignore my energy envelope and I headed for a big time crash last year. It may work differently for those with purely FM.

    I also take a whole arsenal of supplements which includes magnesium (see Systemic enzymes thread on Alternative board) and thankfully I am now up to as much as 85% functional as of this time period.

    Hope this helps

  8. justjanelle

    justjanelle New Member

    I just wanted to make people aware that grapefruit and/or grapefruit juice can actually be dangerous, depending on what medicines you are on.

    There is something in the grapefruit juice (I don't know if they've identified exactly what yet) that causes the medication levels in your blood to quickly rise to up to 4 times the normal levels. This can be not just dangerous but life-threatening. What's more, the effects of the grapefruit juice last for more than 24 hours, so just taking the juice at a different meal from the medication would not change the dangerous effect it could have.

    Please check with your pharmacist if you are currently eating/drinking grapefruit, or if you are considering adding it to your diet. There are over 100 medications that they know of that should never be taken with grapefruit.

    Be safe.

    Best wishes,
  9. hensue

    hensue New Member

    Drank grapefruit juice and was eating grapefruits and passed out.
    It did not work with my meds. Hello no one told me that!
    I do have high blood pressure and I take wellbutrin sr 150 twice a day.
    All I know is I will never take it again, wish i could i love it.
  10. HarleyRidingGal

    HarleyRidingGal New Member

    with the grapefrut juice. I remember years ago, I could not drink it with antihistamines and some anti-inflammatories. It was so dangerous that they removed the antihistamine from the market. I think it was Seldane (?).

    I know that my parents take high blood pressure meds and it's not safe for the type they are on to take it with grapefruit juice.

    I didn't know it stayed in your system that long. Wow! I'll have to pass that along to them.

    That's why I asked the question about pain meds and grapefruit juice. Just to clarify if it was digestive or not. I certainly don't want my opiates to be in my system all at once. I would be a hot mess if I did that.

    I do love the taste of it but just cannot drink it because of the acid and my tummy doesn't appreciate that at all right now.

    Thanks for the info. I appreciate learning new things.


  11. DemonFairy

    DemonFairy New Member

    I know it's a potentiator, which is why I posted that's how I use it. It makes my opioids stronger/last longer - I guess I should have posted that if you don't WANT your meds to be stronger (i.e., heart/blood pressure meds), don't drink the grapefruit juice. I'm drinking it for the magnesium, but mostly for the potentiating effect. Why use two pills when one pill and some grapefruit juice will work just as well? This is ONLY meant for people who use opioids, where the extra boost shouldn't kill you and where you can actually tell what effect the juice is having on you.

    As far as I know, it doesn't defeat the extended release mechanism, but it can/will make your pain meds stronger. When money is an object, making your pills last as long as possible is important.
  12. mezombie

    mezombie Member

    I hesitate to respond to posts like this because I have tried what your friend has and it did nothing for me.

    I know people don't want to hear this so I try to keep my mouth shut.

    But you were upset that people weren't responding, so here you go.

    I keep up with supplemental protocols and have tried many without any success. Their major impact has been to deplete my meager financial resources.[This Message was Edited on 09/13/2009]
  13. DemonFairy

    DemonFairy New Member

    Don't hesitate to respond when something didn't help you. I don't want sunshine blown up my, uh, rear. I'd like to hear if it helped people OR if it didn't.

    Sorry I haven't been around to respond to the comments about me supposedly being upset by people not responding. I've been in a bad flare for a while. Anyway, it wasn't because people weren't responding per se, it was because people were complaining about negative posts and that people were only concentrating on what DIDN'T work, so I posted something that DID work for a friend...and it was mostly ignored at the time. It wasn't because it was a holiday weekend or anything like that, because people were still posting regarding the "negative" posts. I know I was one of the ones being accused of being negative, especially because I'm pro-opioid and haven't yet found any supplement that would help me nearly as much as my pain meds...and I say so, especially when people bash pain meds. Honestly, some of the people bashing pain meds really sound like they need them and I wish they would try them. (or use them consistently) Pain martyrs benefit no one.
  14. Mikie

    Mikie Moderator

    I tried this back when I was looking for help but it didn't help me. Nothing works for everyone.

    Not wanting to discourage anyone or rain on anyone's parade but our illnesses can go into remission only to reactivate later on, depending on our lifestyles and exposure to toxins, stress, and/or infections.

    I can look back in hindsight and see that I got sick and recovered many times until a mycoplasma infection triggered my illnesses, FMS and CFIDS, full blown. I have not been able to fully recover since that infection in 1990. I partially recovered but continued to work at a very stressful job. After a car accident, I went downhill fast. I continued in denial until one day, I simply could no longer get out of bed and go to work. That was about 10 years ago. I have been fortunate enough to have clawed my way back to where I can work part time but I have to very carefully monitor my energy.

    Typically, there is no one magic bullet to cure what ails us. In fact, what many see as being cured is just a remission. Once one is in remission, it is very important not to overdo it, no matter how well one feels.

    That said, however, I think it's really important to share info here on what is helpful. Every treatment which has helped me is something I learned about here. What has helped me hasn't helped everyone else. Whether something helps or doesn't help, I still think it's important to share. Thank you for sharing how this has helped your friend.

    Love, Mikie