Help with ME | Page 2 | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

Help with ME

ProHealth CBD Store

Mandyspike

Active Member
Hello Jim,
Are you still feeling on the better side? You are doing well then at present? I really enjoy you getting back to me yesterday because I got so down about the whole thing.
It is really good for me absorbing what you say, you are so positive in your outlook and I think I need that so thank you.
I am harping on again now but when you were 18 and your symptoms started what do you think triggered your ME/CFS off? Was it anything in particular?
I have just got up and I feel a little better than I have done the last few mornings, which I am grateful for.
Whether I will go to the club or not I don't know. I will see how I feel later.
So you like reading too? What do you like to read? I don't know what I would do without my books. They are a great escape.
In your Physical days did you do sports or anything like that? Or maybe a Physical job?
My previous job was really physical. No way could I do it now.
Hey Karaoke, that must be a great pastime for you? I really love music but unfortunately cannot sing at all. I wish I could. Have you got a good voice?
Do you like all kinds of music? I do but mainly 60's stuff.
Also I must try my Brussel sprouts in the way you do them with butter and onions. I just usually boil mine to death.
Do you enjoy cooking? I love it when I am not to tired to stand in the kitchen.
Thanks for your support Jim.
Mandy
 

ljimbo42

Active Member
Hi Mandy- Yes, I am still doing pretty well. I had a bit of a bump in the road today for a few hours, but I am doing doing well again. I tried to take a supplement that I know gives me detoxification symptoms (it mobilizes toxins). I thought I was taking a low enough dose that it wouldn't bother me, but I was wrong.:)

The good news is I am bouncing back very fast, much faster than I use to, and that is very good news indeed. I'm glad that some of what I say is helping you. I have certainly had many people help me through the years with this illness and am very grateful for their help. What triggered my symptoms initially was a bad virus when I was eighteen.

I got sick and just never fully recovered. That seems to be very common, either a virus, infection, stress or trauma of some kind often triggers CFS/FM. Good to hear you feel a little better this morning, I hope it continues.;) I read a lot, mostly about CFS/ME,and the supplements, diets etc. that will help me recover. I use to do a lot of construction work, roofing houses, and some carpentry stuff, which was very physical, but I really enjoyed until I was unable to do it anymore.

What was the job you were doing that was so physical before you got ME? I love karaoke, it is like an oasis in the middle of a desert often times for me. I can sing some songs pretty well, others not so much, but I still have fun.:D I do like many different kinds of music but like you, my favorites are the 60's stuff. I have a music app on my computer and probably 80% of my playlist is music from the 60's.

I do enjoy cooking when I am in the mood, have the time and energy, so that don't happen too often.:)When it does though, I like to experiment and thoroughly enjoy seeing what I can come with. All the best......... Jim
 
Last edited:

Mandyspike

Active Member
Hello Jim, I am glad to hear once again that you are not too bad. I hope your set back wasn't so bad?
I havnt felt 100% these last few days (I'm so sick of it).

I did go to the Spa yesterday though. I did a little swimming, not too much because I was worried about how it would effect me at a later date.
I really like the Jacuzzi, it's like having a massage. I'm sure it will do me good.

It was very sunny here yesterday and I sat out in it. Feeling the warmth on my body was delightful. We have to get out when we can here as its usually raining so we make the most of it.☔☀

I used to work in a restaurant for a Pharmaceutical company and along with that I used to go on site and tend to the vending machines. Part of my job was taking stock on site, climbing lots of stairs with quite heavy boxes. Then when deliveries came I had to put it all away so I was kept very busy.

When gouged to get in from work I would put on a fitness DVD and work out to that, do half an hours rowing on my machine, go walking and keep the house clean, you know all the usual chores? When I look back now I must have been so fit. Now it's all had to stop.

Your job was really Physical too wasn't it? You must miss all that? You were so very young when the illness hit you.?

I did manage to get to town yesterday for the supplements you recommended but the health shop that i went to have never heard of them so I will order them off the Internet.

Keep up with the singing and don't annoy the neighbours lol
 

ljimbo42

Active Member
Hello Mandy- You wrote-
I havent felt 100% these last few days (I'm so sick of it).
I can't tell you how many times I have said to myself "I am so sick of feeling sick", when I have had a flare. A number of years ago I was about 80-90% bedridden and was almost constantly in a flare like state, it was horrible!

Then about 8 years ago I decided to take the bull by the horns and find some way to get better. I remember saying to myself "there has to be a way out of this", and I have held onto that ever since. The first thing I did was started cutting back on my sugar intake and noticed some definite improvement. I used to eat WAY to much sugar, every day for most of my life, up until then.

I now believe stronger than ever that there are ways "out of this", ways to get healthy. I am sure through trial and error you will find the right amount of swimming that is right for you. I would think the Jacuzzi would really help, especially over time. The longer you do it, I'm guessing, the better the benefits. You say it's usually rainy where you live, are you from the UK? I do miss being physically active. My hope and my goal, is to improve my health enough to be able to work again, and become more physically fit.

It's a tall order, but I feel like I am on the right track and have learned enough about treating CFS/ME to keep me there. The supplements I told you about are the active forms of vitamin b-12 and folic acid, so they are harder to find in health food stores than the regular vitamins. There are many places online that sell them though.

Folic acid is converted into methylfolate, the active form of folic acid, in the body through a 4-5 step process. The problem is that people with CFS/ME have a very difficult time doing that 4-5 step conversion, so we are deficient in methylfolate, which causes a whole cascade of problems. I was 18 when I first got sick with CFS, but I was able to get healthy enough again to work until I was almost 30. Although I was never 100% after that first time CFS hit me, I was still very physical until around 30.

I will continue with my singing, I always make sure my neighbor downstairs from me is not home though, I don't want to ruffle any feathers;). Hang in there Mandy, this flare will pass.:) Jim
 

Mandyspike

Active Member
Hello Jim, Thank you for your kind words.
I must say you sound such a very positive person especially with you tolerating the illness for so long. I wish I had your optimism but unfortunately I don't.
I do try Jim really I do but I can't see an end to it to be honest.
Last year when I was really bad I did the same as you. I cut down on my sugar intake too. I have always had sugar in my tea and coffee but I haven't had it in my drinks for 12 months now. However, I must say, I don't enjoy my drinks without it but I soldier on. I am sure i will get used to it eventually. I don't drink soft drinks either. I can't say that it has had any effect on me for the better but, we have to try these things. Sugar is very bad for you anyway.
I haven't had a bad day today and I have been going about my business as usual but my symptoms are threatening me constantly. You know what I mean?
How has your day been? Have you felt ok?
I was looking on YouTube earlier today and came across a lot of people far worse than me. It made me quite sad.
While I was looking on YouTube I came across a comedian called Ricky Gervais making a joke out of the condition ME insinuating that it was an excuse to get out of work. What an ignorant B****rd he is. He isn't on his own though is he?

I will look on the Internet for the supplements tomorrow, like I said the health shop near where I live haven't heard of them. Yes I do live in the UK and can't always get things that other places can. I will sort it out.

I am hoping to go to the Spa again tomorrow depending how I feel.
Can I just mention another thing that has just come to mind? The Doctors try and encourage us to get out and get some exercise. You know as well as I do when the Fatigue sets in there is no way you could take any form of movement ..
They haven't a clue!!
I like your positivity Jim. Keep it up
Mandy
 

ljimbo42

Active Member
Hi Mandy- Have you tried that all natural sweetener "stevia"? It comes from a plant, and is very sweet. It doesn't have all the bad effects that sugar has though, like raising blood sugar, etc. I bought some a couple of months ago and it tastes just like sugar. I put it in anything I would put sugar in.

I like peanut butter on celery for a snack, but the peanut butter I get is all natural and has nothing added. So I put some stevia in the peanut butter, stir it up and it's delicious. You can also put it coffee, tea etc. I think I do know what you mean by your symptoms are constantly threatening you.

That happens to me quite often. I feel a little bit off and I keep waiting for a flare to show up. It happened to me just yesterday or the day before. Luckily my symptoms faded instead of getting worse, I know that fear though, all too well. I am still doing pretty well, although my symptoms still wax and wane, overall my symptoms have been fairly mild. I think I saw that clip of Ricky Gervais, he obviously has no idea what ME really is, the pain and the suffering it causes.

Hope you enjoy the spa, if you are able to make it. Yes, exercise will only help if your body is able to adapt to it. Unfortunately for MANY with CFS/ME, our bodies don't adapt to the exercise and it does more harm than good.

Most regular doctors are just stumbling around in the dark when it comes to helping those of us with ME. I heard someone once say "do what you can, with what you have, where you are". ;) That makes a lot of sense to me. :) Take care............ Jim
 

Mandyspike

Active Member
Hi ya Jim,
I have just awoke and up to now i am not too bad. I usually feel dreadful first thing, it's cold so that doesn't encourage me to get up. how about you what are you like in a morning?
I have my brother coming for lunch today and i am going to make him a Quiche so I can't be lying in bed all morning lol. I will just take my time with the cooking.
Peanut butter on celery sounds nice? I love peanut butter and I adore it on bagels.
I haven't tried stevia but I have heard about it. Is it different to other sweeteners because they are not good for you neither are they? I could get some stevia in and give it a try.

I am so pleased that you have not been suffering too bad lately. I hope that it continues for you.

I remember Christmas day 2014. I had the best day health wise for months, I was jumping up and down shreiking . I feel well, I feel well. It was fantastic. I have not felt that good since. It makes you seriously appreciate good health.

I did go to the spa yesterday but I only swam a little. I find that keeping my head up out of the water caused me to feel discomfort in my neck so I stopped. The jacuzzi was cold so I didn't enter that. I hope it's fixed the next time I go.
That quote you mentioned is good advice. I will remember that.

Mandy
 

ljimbo42

Active Member
Hey Mandy- I usually feel like I am walking ankle deep in mud for the first 2-3 hours after I wake up.:) Lately though, I have had much better mornings mixed in with the slow ones. The last few weeks I have been increasing the dosage of supplements I take to boost glutathione levels and they are clearly increasing my energy as well.

There are several supplements you can take to boost glutathione levels, methylfolate and methylcobalamin are just two. When you get your supplements, I think it would be best to start with the methylcobalamin (b-12) and wait to see how you feel taking that before you start the methylfolate.

What is the dosage of the methylcobalamin you ordered? Yes, stevia is very different from other sweeteners, it is all natural, comes from a plant and is not man made like aspartame saccharine etc. How did your visit with your brother go?

Hopefully the next time you go to the spa, the jacuzzi will be up and running again and you can relax in it for a while. Just a little trivia here-I was curious about the time difference between you and I (I live in the united states, in New Hampshire), so I googled it and found out that the UK is 5 hours a head of New Hampshire.

I will leave you with this, a friend of mine told me this joke- "don't judge a man (or a woman), until you've walked a mile in their shoes- that way, you'll be a mile away and have their shoes":D
 

Mandyspike

Active Member
Hello again Jim
I have ordered Methylcobalamin 5mg tablets. I don't know when they will arrive , it will be interesting to see the outcome, whether they help me or not. I hope so. They must be doing you some good by the sounds of it which is excellent.

What have you been doing with yourself today? Going by what you say about time difference it will be about 15.50 where you are so all evening to go.

I live close to Manchester. Have you ever heard of that?

My brother came and we enjoyed our lunch together but come the afternoon I felt so very fatigued. I still feel that way and can't wait till bedtime. There is so much I need to do but no energy. I have just been sat reading about a family who grew up in poverty just after the war. It is really interesting.

I will see if I can find Stevia in my local supermarket next time I go.

I was hoping to go to the Spa tomorrow but once again I will see how I feel when it comes to going.
Yes hope Jacuzzi is up and running, that would be a bonus.

Love the joke!!!

Have a nice evening
Mandy
 

ljimbo42

Active Member
Hi Mandy- I also have the 5mg sub-lingual tablets. I think it would probably be best to start with only 1/4 tablet for a few days to make sure you don't have any adverse reaction to it, most people don't, but I have read of some that do. I didn't have any problem at all with it.

I spend much of each day cooking and doing chores. I cook 3 meals a day, so that takes about 2 to 2 1/2 hours each day, itself. Then I spend another hour or two doing chores and odds and ends that need to be done. I read in between, whenever I can during the day and at night I usually watch netflix for a few hours.

I have heard of Manchester, in fact we have a Manchester, New Hampshire here in the states. I live about 45 minutes from manchester,nh. and about 15 minutes from portsmouth, nh. Have you heard of portsmouth or manchester,nh?

I usually have a dip in energy between like 4:00 and 8:00, but then my energy usually comes back up for a couple of hours.

I just had some pickle beets with stevia as a sweetener, and vinegar, I love um. I use to buy canned pickle beets, but the sugar content was really high, so now I make my own- problem solved.:)

I have a brand of stevia made by a company called "KAL" and it says "pure stevia natural extract" on the label. It is a liquid and comes with a dropper, because you only need about 5 drops to equal a teaspoon of sugar. As I said before, it is very good and tastes just like sugar to me.

Hope you're having a good day. Jim
 

Mandyspike

Active Member
Good morning Jim
I still in bed having my morning coffee I have again that horrid morning feeling that we get , the one you described brilliantly in one your recent posts.
I still thank God I don't have to get up for work as I would never make it. Like I have mentioned before I sometimes would love to find a little part time job, just a few hours a week but it is out of the question.
I didn't know there was a Manchester where you are, nor a Portsmouth.
Funnily enough yesterday I was reading one of my books and within a sentence it mentioned New Hampshire and Manchester and I thought it quite a coincidence.
We also have a Portsmouth over here and I live about a four hour car drive away. I only went once and I found it very nice. That was many years ago.
Yesterday I felt a little Fatuged, not as much as the previous two days which I am thankful for. I had to make my Son a cake . There is a charity event on so they are selling cake to raise money. It was good for me to do that as it kept my mind occupied so as not to think of my condition.
The cake went all wrong. I didn't realise until it was in the oven for about 15 mins that i forgot to put the sugar in it. I had to start again quickly as i had a dead line. I got there eventually and my boy was very pleased.
A friend of mine has urged me also to try Magnesium and Calcium tablets. What do you think to them? Have you ever given them a go? I have to be careful as I take a very good multi vitamin already.I don't want to overload.
I also read yesterday about the condition coeliac disease where some people have similar symptoms to ME/CFS
There was a young girl who had, so she thought ME/CFS , was subsequently bed ridden for 14 years, she decided to exclude all products which contain gluten out of her diet and within no time at all she was cured. Back doing all the normal things that young girls do. I'm thinking is it worth a try? I love my bread and pasta though and all the other delicious things that contain gluten too. Have you heard of that disease?
Also regarding ME/CFS do you think it effects mostly very active people? When I read different articles about the disease a lot of folk seem to have a very intense lifestyle. Sporting people and so forth.
I just wonder sometimes whether I had done far too much back when the condition started, that's all I can put it down to really.
Has anyone in your family suffered with this illness? I just wondering could it be Genetic.
I just need answers. I still find it hard to believe that our own bodies can make us suffer like they do.
Have a good and painless day.
Mandy
 

ljimbo42

Active Member
Hi Mandy-That cake story is funny- that sounds like something I would do.;) Glad you finally got it sorted out. Calcium, from what I understand, should be taken at the smallest effective dose in those of us with ME/CFS, I usually take about 700mg a day.

Magnesium helps many of us, and can be taken at doses of 600-800mg a day very safely. Magnesium citrate is probably the least expensive and the best absorbed form there is for the money. I have heard of celiac disease. I don't think I have it, but from what I understand about gluten, it can be very hard on the digestive tract, so I cut gluten out of my diet a year or so ago.

I think that most people that get ME/CFS had very stressful lives prior to getting it, I most certainly did. Weather it was a stressful diet, exercise, work, relationships, addictions, or a combination of these things, I think stress plays a huge role in getting ME. Yes, I completely believe the other part to getting CFS/ME is genetics, I have studied and read about the genetic connection extensively in the last 2 years or so.

My brother and sister both have CFS like symptoms and have for years. My son also has some minor symptoms and he's only 28, so I firmly believe it is genetic and runs in families. I have read so much about the genetic components, I could probably write 2-3 pages about it easily, but not without getting carpal tunnel.:)

I believe that diet, and lifestyle changes, as well as optimizing one's methylation cycle (to bypass the genetics that are causing problems) are key to getting healthier. Like you, I couldn't understand what could possibly make us feel as awful as we do sometimes.

Now after years of extensive reading and research, I have a pretty good understanding of it, and it makes much, much more sense now. There are very good reasons why we feel the way we do. All the best, Jim
 
Last edited:

Mandyspike

Active Member
Hi Jim, thanks for your last post. I have felt better today than I have for a while, even when I woke up this morning I wasn't too bad at all so I managed to walk into town which is about a mile away from where we live. However I did phone home for a lift back as I was flagging somewhat.. It's tea time now and I am feeling fine. Hooray!
While I was in town I bought the Magnesium and Calcium tablets. I am hoping I am not wasting my money because I watched a TV programme a little while ago, some sort of documentary and it was saying that vitamin and mineral supplements are a waste of money and don't help at all with your health! You never know what to believe. Anyway I have taken them so we will see what happens.
So, you are not the only one in your family with our condition? Your Son has a mild form? What about your siblings, are they as bad as you? Are you all helping each other cope?
When I look back at my childhood my Mother used to be in bed such a lot. I thought that she might be depressed but in hindsight I am wondering if she had ME/ CFS. Unfortunately both parents are gone now so no one to ask. It has got me thinking though.
You are gluten free then? Do you think that has helped you? I don't know how you do without your wheat and such like. I live on it. I have tried to be free of it in the past but I didn't last very long.
What a healthy lifestyle you appear to have. Do you smoke or drink?
I have just had my evening meal. Plenty of greens along with a good steak.
My Son told me that the cake I made went down a real treat. He is very cheeky, he gave them the idea that he made it himself.
What you up to at the weekend? I have a couple of Grandchildren staying over, I won't be doing much with them: perhaps play a couple of board games, that usually keeps them happy.

Goodbye for now Jim
Mandy
 

ljimbo42

Active Member
Hi Mandy- That's great that you feel good today! You walked a mile into town, that's quite a walk. I can say with complete confidence that supplements are not a waste of money. Whoever did that documentary has not done much research on how vitamins and supplements help prevent and even reverse disease.

I am only doing as well as I am because of supplements. If it were not for the supplements that I take every day, I have no doubt I would be much, much worse off. Many other people here at prohealth have also been helped tremendously from supplements. If fact, the founder and CEO of this website, Rich Carson, no longer suffers from CFS/ME. Here is a quote from a post Rich Carson made-
The mercury protocol that I started almost 10 years ago made a huge difference in my health, as I began to have more and more energy, and other aspects of my health began to improve. Most notably, my exercise tolerance continued to increase to the point that I felt stronger than my athletic, strong, super fit hiking partners as we hiked high up into the Santa Barbara mountains. At one point last year, I CRUSHED though the PEM barrier. For those of you who don't know, 'PEM', stands for 'post exertional malaise', and in my opinion, it is a critical feature of ME/cfs. In fact I do not think a person has ME unless they suffer from PEM.

How did this happen after 31 years of suffering from PEM?
I am not exactly sure, but I will begin to blog about my experience soon, and you can check it out on ProHealtlh’s website in the near future if you are interested. What does it feel like to attack a mountain, hit the summit, see that your heart rate is 179, and know that you won't get sick at all--and that you will feel great the next day because of it? Fantastic! Actually, it is beyond words. Tears of happiness...
His mercury protocol that he mentions consisted mainly of glutathione boosting supplements. Which doesn't surprise me at all now, knowing how devastating low levels of glutathione are to the body. In fact, I believe low levels of glutathione are the very core cause of CFS/ME.He reversed his illness with supplements.

My siblings, like my son, also just have fairly mild symptoms and are not disabled. It sounds very possible that your mother did have CFS/ME.I don't know if going gluten free has helped or not, but since almost all functional medicine doctors that treat CFS say to cut it out of the diet, at least until you heal, I have done so. I will probably try to add it back in when I feel healthier and see how it goes.

I don't smoke (never did luckily) and I quit drinking over 20 years ago. That evening meal you had sounds pretty tasty, and healthy. So your son took credit for you're cake- it must have been pretty good cake!:) I don't have any plans for the weekend rate now- I'll see what happens. Hope you enjoy the time with you're grandchildren. Jim
 
Last edited:

Mandyspike

Active Member
Well Jim yourself and Rich Carson have made my mind up for me. I am looking forward to experimenting.
Hopefully the supplements I ordered on line should arrive next week.
I really haven't had any Fatigue today, it's such a relief isn't it when you are symptom free for a while? I do have horrid discomfort in my legs but I am getting used to that, they plague me all the time.
Let's hope I don't pay for my activity tomorrow.
You have a very healthy lifestyle which is great. You don't deserve to be poorly.
I don't smoke neither, I used to but I quit 15 years ago. I do like a beer now and again though.
I should be asleep right now but I'm not tired at all so I will read a little.
Have a nice evening
Mandy
 

ljimbo42

Active Member
Hello Mandy- I'm so glad you had a good day yesterday. They are like a ray of sunshine in a storm. ;) It's really interesting that you used the word "experimenting" when talking about trying supplements. It really is a lot of experimentation to find out what works for each of us, and at what dosage.

Each of us are biochemically unique, so finding which supplements work best for us is only found out through trial and error. Good for you for quitting smoking, I know it's not easy. My sister finally quit after about 30 years or so, but it took a mini stroke to get to that point.

You wrote that you were not tired at all at bedtime last night. That happens to me quite often when I do a lot of exercise. For some reason it really winds me up, and it is hard to wind down by bedtime. I hope today is a good day for you.:) Jim
 

Mandyspike

Active Member
Hi Jim, I did eventually get off to sleep last night. Thankfully.
I hope you are doing all right. I have my little ones here this weekend. They keep me on my toes.
What a shame about your Sister. That's terrible! I hope she is ok now.
I will put the children to bed now.
Enjoy the rest of your weekend
Mandy
 

ljimbo42

Active Member
Hi Mandy- I am still doing well, how are you doing now, after that walk to town? I'll bet your grandchildren do keep you on you're toes.:) Luckily my sister fully recovered from her mini stroke, in a relatively short time. Will talk to you later- Jim
 

Mandyspike

Active Member
Hi there Jim, I have been feeling ok thank you. It's good to know that you have been doing well too.
It's good news about your sister making a full recovery. You all must have been very worried at the time.
I have just arrived home after a birthday bash. Nothing too extreme. It was family wich involved quite a few children.
I have enjoyed being with them.
My Grandchildren are back with Mummy and daddy now
Its only 17.30 but that is me done for the evening. I am going to relax. It isn't very warm here at the moment so I have put the central heating on. We haven't had much sun as yet so there is still a nip in the air.
Great to catch up
Mandy
 
Top