The FastDay Forum

[carorees]

The high dose will be licensed for use in specific conditions, for a limited period, but its use at low doses for long periods, as needed for a chronic condition, has not been licensed, so the issue is about the duration of treatment rather than the dose so much.

Thank you Caro@carorees that makes sense x

Hello my dear friends, I most humbly apologize for just disappearing. @CandaceMarie, and @nursebean, and all our friends. I've been having a bit of a rough time of late and have just not be able to post. I have missed you and thought of you daily.
Candy, I am hopeful the LDN helps you. I am not all that familier with it, but you might check out the forums at Phoenix Rising. There are several folks on there that have tried it, some with good results I think. There are lots of really smart people there that can probably answer any questions you might have. As for why low dose isn't approveed and larger doses are, beats the heck out of me. . Oh, I do hope you find some relief with it.
Beany, so good to see you! I have been sort of fasting. But have got to get better seated in the saddle myself. I, too, started a new medication and it is causing weight gain. Probably because it makes my stomach hurt if I don't eat every couple of hours. Makes fasting a bit tricky. Today I'm going to try and count my calories and see just how little I can eat and still keep the pain down.
I finally saw the rheumatologist about the psoriatic arthritis thing. So far she is saying inflammatory osteoarthritis. I didn't even know such an illness existedl I always thought it was either inflammatory, or osteo. It is a long drive to see her, about 120 miles round trip, and it's hard for me to do, but I liked her. I have to go back twice this month, once for a bone density scan and then to see her. At least she didn't treat me like a hysterical female, which was nice.
So, that's some of what I have been up to. I am so sorry I haven't been a better friend, and I promise to do much better!! Here's to our new resolve and our new year!! Love Phyllis

Oh Phyllis @MountainMyst you are our lovely friend and we know that you're here with us in spirit on days when you cant write anything. I'm sorry that you've bean having such a bad time lately. Your new medication doesn't sound too good. Oh poor you. I'm sending you some marshmallow hugs, which I have neglected to do lately and hope that you will soon start to have better days. Have you thought of trying Candy's new syrup? I'm really hopeful for her and am keeping everything crossed...which makes working at MovieBox Pops a little bit tricky!
Bean

Great to hear from you@MountainMyst! Sorry things are rough.
inflammatory osteo..i think a lot of our health probs are caused by inflammation..muscles,gut,everything. I know i always feel hottish and inflamed and cannot deal with heat,it really disturbs and dismays me.Much more comfy to be on the chilly side.
Thanks for thePhoenix Rising! I just came across it yesterday and thought,what a fab mpname! Going to have a good read there.
Carorees explained the low dose thing..its licensed to be taken in a high dose for a shortish time,but they don't know the longterm effects of a low dose for chronic illnesses.
I' m on Day 4, havent felt any change( some report immediate benefit) but its early days and ive barely slept since last Friday.First day i took it i had an hour or so of feeling relaxed and serene! Not a feeling i very often have am always unrelaxed and uptight!
Anyway hang on in there Phyl and call when you can..i hope your medication starts to show good results.Wdnt it be lovely to feel better! X x

Hi Beany, I expect that being all crossed up does make your job a bit more difficult. but I know Candy appreciates your good wishes. I'm so excited that she is trying something with possibility to help. I haven't tried it myself, but if Cany has good results, I may try and find a doc to order it for me( not an easy task here)
The stomach thing started a whle back, too many NSAIDS on an empty stomach, but as this particular one is much stronger, it's making things much worse. Still, I'll try and stick it out until I see the doc again, it does seems to be helping the pain and stiffness in my hands.
As my brother says " this getting old thing, ain't for sissies" of course with the M.E. I've felt pretty old for about thirty years. but, shouldn't complain too much about getting older, some folks don't get the chance.
Sending you marshmallow hugs too.
Hi Candy!!! You and I must have been typing at the same time! I saw that Caro had e planned the dose thing AFTER I posted my note. Gee I miss my brain. I do think inflammation is a bit part of most illnesses. I just have been reading that some people are doing better on a grain free diet. I may give it a try. But on that one I think I'll wait until after the first of the year, cause I know I won't stick with it during the holidays. But am going to try and cut down now. Glad you found P.R. It's a good forum with lots of really smart people.
Well, gotta run, the out door kitties are looking for their breakfast. Sending you a big hugs this morning. Phyl

I love the " old age aint for sissies" thing Phyl!
Was told in my late forties my physical age was 80 due to this horrible disease..great news eh! Since then my face has caught up and looks about eighty also..but good point you make that some folk don't get the chance to age X
Grain free..who'd have thought it after all the time of believing multi grains are so good for us x

Hi Candy, hope you were able to sleep last night, and that your body can get adjusted to the LDN a quickly. It would be so wonderful if you could benefit from your new med.
I'm not sure if The grain free thing will help or not, but doesn't hurt totry it. I did gluten free for several months with no positive results. So we shall see. Most of our grains here are GMO and I'm a little suspicious of them, and they aren't labeled, so you can't tell. We have tons of things we eat regularly that are banned in your neck of the woods. We seldom eat processed foods but going to try and clean up the diet further.
Gotta run, my kitty is helping me type and I think she is winning the battle. Try to be back later. Hugs Phyllis

Hi @Candacemarie, how are you? Sleeping better I hope. Thanks for the suggestions about ways to treat my tummy. I am beginning to think these meds aren't worth the side effects. Hope your new med. is much more effective.as for looking our age, I guess we will just have to embrace aging gracefully. hope you have a great night.
Hi @nursebean, how's my favorite business tycoon?? Hope your day was a good one. Hugs to all,Phyllis

Hiiii @mountainMyst! Just settling down for the night and hoping for a good sleep!
Grabbed a few hours last night,hallelujah!
Hope yr day is going well Phyl .i reckon it must be getting towards evening now....xxx

Hi, @CandaceMarie, hope you are doing well this day, and that you were able to sleep. Oops gotta cut this short as the dog is having fits to go out. Will be back later. Hugs

Hi @CandaceMarie, well yesterday was one of those days and I didn't make it back. How goes it? Sleeping any better? How did your fasting go this week?

I gave up on the new med. my stomach was getting worse by the day, and I was puffy, and gaining close to a pound a day, despite watching my calories very closely. So, I stopped(not recommended I know) well after two days my stomach is hardly hurting, my weight has returned to normal and my pain hasn't really increased all that much. So I'm studying up on natural anti-inflammatory foods and herbs, and taking a complete break from NSAIDS. I'm taking twice my usual dosage of omega3's and using valerian for pain and to help with sleep. So far so good.
My next doctor appt. is on the 18th, but I'm going to need to reschedule. It's at 3pm, and 60 miles away. That will leave me trying to drive after dark, and with the cataracts, that isn't a good idea. When we scheduled it, I forgot that little detail.
Hope you and all our fast friends are having a great day. Hugs, Phyllis

@mountainMyst sounds like you did the right thing xx
Re yr cataracts...yes deffo reschedule yr appt ..be safe!..
Have you thought of surgery? I had both eyes done a few years ago...difference has been tremendous,highly recommend it x
My sleep still poor and new med not showing any good results yet,but no side effects either xxxxx

Hi @CandiceMarie, I do think I made the right decision about the meds. My stomach is 100 percent better. My joints aren't so sure.
I haven't thought much about surgery because I just found out about the cataracts. Since I don't drive much, and rarely at night, I'll probably put it off for a while because of the costs involved.
Sorry you still aren't sleeping well. Glad at least that you aren't having other side effects. Hope you see some improvements soon. Hugs, Phyllis

Hi Phyl @MountainMyst sometimes we need to go with how we feel don't we,your body was telling you that those meds werent right for you
If it wasnt for the NHS,i wdnt have been able to get my cataracts done,and wd still be flagging lorries down,thinking they were buses! Its dreadful that you have to put up with them
Feel horrible today,have got a few things i should do this avvo,so i hope i perk up a bit .
have got that " poisoned " feeling ...dont know which i find harder to deal with,the poisoned feeling or the dragging heavy overcoat pains.. luckily i can just stay put if i have to..how do people with little kids cope.
How are OH and DD?
My DD is seeing her CFS specialist this afternoon x x