Discussion in 'General ME/CFS News' started by stefny, Sep 12, 2012.
I have been sick with CFS for four years following a bout of pneumonia. My regular doc here in Victoria, Canada has been helpful and I have seen a lot of specialists, resulting in a diagnosis of MGUS (a precursor to multiple myeloma). But other than taking my illness seriously and putting me on higher dose of synthroid she has not been able to help much with my CFS symptoms.
In August I was back in Michigan where I used to live for many years and saw my old doc there who is a DO. He suggested trying ATP Fuel and I contacted the manufacturer as he suggested with very good results. I had to get the doc to call and add me on his list and they are now shipping the pills to me. I since called back to Researched Nutritionals and they gave me info on a couple of docs local to me who carry their supplements.
Most importantly this stuff really works in my case. I have gone from being forced to rest for hours most days to being more active again. My symptoms are now mild to moderate versus moderate to severe most days.
I still get knocked out when I have a virus, but taking the pills seems to shorten and reduce the impact even then. Many of my friends and family have commented on how different I look these days and I honestly feel I have come back from the living dead.
It was a hassle to deal with the phone calls etc to get started and that delayed getting on the pills for a few days, but it was well worth the wait in my case! When I talked to the folks at the supplement company it sounded like they have a lot of naturapaths, wholistic MDs, DOs, chiropracters etc prescribing this, but they do require you to have a doc of some kind to prescribe it.
Thanks for confirming this Roberto7. I think I started on the NTFactor about a week ago, not quite even and I'm already noticing the difference. Like you say - symptoms are less severe. It's so good to know someone out there has had a good reaction to it as well. I have a serious problem with the PEM so was hoping this would help. Can you tell me how long it took for you to feel as much better as you are? You started taking it in Aug.? Did it kick in right away? I'd love to feel even better of course. I'm wondering what the difference is between the NT factor and ATP Fuel. Guess I'll look it up. Maybe I should switch.
I just ran across this article today on mitochondria restoration and ATP regarding ribose and creatine which is worth a read,
Have been experimenting a little myself with like two days on and two off with creatine the last week or so, also because I have trouble with the water intake with daily use and finding the days on creatine are so much better, generally feel so much better in my body and am able to tackle activity with more ease; working for me anyway.
Good article, thanks GhostGum. I was trying to find the first part where it says to also take some other supplements on the first table that will also help but couldn't locate it. Anyway, I've been doing the D-ribose/Creatine and NTP Factor for maybe a month now. At first I thought it was really helping but as always... it didn't last. I did start taking monolaurin recently again so maybe I am having die-off from that but don't know. It seems nothing lasts for me. I'll keep using it though.
Hi stef, sorry to hear that you are having no luck.
Are you sure you do not have any improvement at all from where you started? Do not mean to question your own awareness of your illness but I just know in the past I have also used things which initially seem to help, then I plateau out thinking things have not changed when in fact there is some improvement in symptoms; when you are fighting it day in and day out can be hard gauge sometimes.
Some do say creatine can take a month or so to notice benefit, the ribose I would think though is probably more short term.
Thx Ghost Gum. Funny you should mention that. I was actually wondering if I have plateaued mysel and maybe I am somewhat better. I guess I'm still sorta miserable so it's just hard to tell. I'm having a better day today but then I spent 2 hrs. in HBOT and had hydrogen peroxide i.v. yesterday. Not sure, I'll stick w/it cuz I really thought it made a difference when I first started. Thx for info.
Yeah the constant fight and being caught up in it tirelessly can certainly make it hard to gauge benefit from supplements, plus it is rare they are ever going to make a dramatic difference, can only hope that they can make slight improvements and then maybe it will snowball a little over time.
One of the keys I think to using supplements is if you do notice short term benefit keep in mind which seem to have done something and you can cycle them. When you then cycle off something and then go back on it you can gauge again whether you notice something, then you will probably find which you want to stick with long term.
Yeah, I agree/good point. Maybe I'll take a break after this bottle and see if I feel worse. You said it..."the constant fight and being caught up in it tirelessly..."
You mentioned having started the Lauricidin recently. My experience was that I had to start very slowly (a few pellets) with Lauricidin at first, as it caused some die off symptoms, and subsequently increased my fatigue. My doctor wanted me on this because he felt that it was a good antiviral and antibacterial. I have slowly worked up to 1 scoop three times a day. You might want to take a look at the dose you're taking, rather than adjusting the NT factor.
I started Lauricidin this week to try to knock back my reactivating virus. I read that it was to be taken after a meal. Today however, I read somewhere else that it was to be taken on an empty stomach. Now I'm confused. What is the correct way to take it?
The jar that I have says to take it with meals, and that's how I have always taken it. Don't take it with hot liquids (for example hot coffee or tea), so I usually take it as far apart from a hot beverage as I can during the meal (I take the Lauricidin first, then just after eating, I drink the hot/warm beverage. I do take a while to eat though, but this has seemed to work for me.
Yeah, I should check that. Not regular with it. Too much stuff. Is it helping you with the 3 scoops? I got 2 cold sores in 2 weeks despite taking 3 scoops most days. And didn't notice feeling better. But maybe I took too much too fast as you say. I don't usually get two cold sores all year. Wondering if it's this Neo40/nitric oxide supplement my doc also put me on. Another expensive supplement I can't notice anything from.
Ditto. I take w/food but mine says this:
Ultimate Monolaurin comes in small, easy to take pellets. In fact, most say that taking the tiny 30 mg pellets (about 85 in a tsp.) makes it much easier to swallow other supplement tabs and capsules. The small pellets may be placed in the hand and swallowed with any liquid that is not hot.
For those with a sensitive stomach, Ultimate Monolaurin can be taken with food. Actually, the most effective way is with a little food. The extra digestive flow helps the digestion of monolaurin. However, it can be taken with an empty stomach or full meal. The dose can be tapered off as symptoms decrease. Of course, you should always seek the advice of a physician if symptoms persist. "
Looks like we are using different brands of the monolaurin as your instructions are a bit different from those on my container. My experience has been that it takes a long, long time to see results from the antibacterials/antivirals. For me this has meant weeks/months, not days. I am not yet sure if the Lauricidin is helping, but I prefer to stay on it a while before mixing things up a bit. I have Lyme, so need a wide range of antibacterial treatments.
Sounds like our doctors are addressing some of the same things. I looked up the price of the Neo40/nitric oxide. Wow, you are right about the expense! Just a thought, my doctor used nitroglycerine patches (working up very slowly from just a tiny sliver, say about 1/32nd of a patch, so as not to get a headache). This was affordable, as they are a prescription medication. Maybe you could discuss options that are less expensive with your doc?
Coconut oil and coconut manna is good for that. I take them daily.
Hi, don't know if anyone is still looking, but iHerb has some forms of NT Factor--I have just started taking the powder form--too early to tell really, but it seems to be helping a bit. Another person here has been taking the more complex form, and it has definitely been helping him. Best, Chris
Hi mikel.. I understand that you may be wanting to help the other and are answering her questiong but in your case that's a rule breach. Sales posting isnt allowed here (thou you are wanting to help, if you were allowed to do it when you are a seller, this site would soon be full of sellers), i suggest you delete your post before the mods see it if you are interested in staying around this place.
@jeffrez, I know this is an old post, but can you tell me where you go the NT Factor? My doctor recommended it, but I cannot find it anywhere.
You can also try a Google Site Search
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