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TigerLilea

Active Member
Hi all, I have recently been diagnosed with this almost unbearable condition M E. I have never joined a forum before but I am hoping I might get some help from it?
I have been suffering terribly since May 2014. Everyday I have felt I'll somedays worse rpthan others. It's hard to believe its not something life threatening I get it that severely. I am 58 and feel 90
What gets to me more than anything is the response of some people when you inform them that M E is what I have. Comments like its all in my head. People who suffer this illness know how debilatating it is? I can't describe my symptoms as I have never in my life experienced anything like this. I was so fit and healthy. I don't smoke or hardly drink and I eat well. It's just not fair! Later today I will have to take my 3 year old Grandson to the park but I know that after pushing him for the afternoon I wont be able to get out of my bed the next day. I would just like to chat with people who are suffering like me and that I am not on my own. Help!!
Hi Mandy and welcome to our group. Where are you on the peri/meno journey? Considering your age it is possible that there could be a connection as some women get these same symptoms as they travel through perimenopause and through to menopause. I've met a few women who were pretty much housebound until three or four years post menopause.
 

Mandyspike

Active Member
Hello TigerLilea,
Thank you for responding to my blog . It is interesting that you mention the Menopause as it is something that has crossed my mind.
I must admit that the hot flushes these days are so much more accentuated causing me to feel worse than I already am.
I started the Menopause at age 50 and I am 58 now I thought it would get easier lol.
At this moment in time I am not house bound like the people you mention. I was in that situation for a big part of 2014. I am better than I was then but I still suffer with discomfort in my body and terrible malaise at times.
A part of me would like to assume it is the Menopause then I could at least put this condition down to something!
Thanks again TigerLilea
 

UVAMOMB

Member
Hi, Mandyspike, you are such an easy person to talk to, and you are so caring. Thank you so much for taking time to talk to me! Achalasia is a very rare motility disorder of the esophagus, so that and GERD and two hernias are the reasons for my surgery.
I know how hard it is to say "no" when someone asks for help, but please, if you don't feel like it, give yourself a pass!!!!
Take care of yourself. I hope we can keep in touch.
How do we recommend a person for an award? I think you should definitely have one ASAP! God bless you!
 

ljimbo42

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
Hi Mandy- Sounds like you had a pretty good weekend. Children can be a lot of fun, especially when you don't have to take them with you when you go home.;) I wish it was just a little bit cooler here today, it's almost 90 degrees in the shade, it's just about time to put on the air conditioner.

I have been slowly going up on the dosage of 2 supplements that help boost glutathione. I am definitely feeling better because of it. I have learned from past mistakes not to increase the dosage to fast though, because it causes detox symptoms which are no fun at all.


When you get you're methylcobalamin and methylfolate, please start with a very low dose of the methylcobalamin, maybe a quarter tablet and wait to take the methyfolate for a few days or so, to see how you feel taking the methylcobalamin first. Take care......... Jim
 

Mandyspike

Active Member
Hi Jim, for some reason I have totally overlooked your latest message to me. I don't know what happened there?
So it's feeling quite hot where you are by the sounds of it? It's still cool here. There is not much flesh on me so I seem to feel the cold more.
Still not received supplements yet. We have had a bank holiday this week so that is probably the reason for the delay.
It's good that you are feeling better with what you are taking. Let's hope once again that it continues. Stock up on the nutricious foods.
I am still feeling quite well. I can't believe it. Just experiencing mild symptoms which I am coping with.
I drove over to the spa this morning and sat in sauna and steam room. I didn't stick it long, it made me feel quite nauseous
What have you been up to today? Anything interesting? Let me know
Bye for now
Mandy
 

Mandyspike

Active Member
Hi, Mandyspike, you are such an easy person to talk to, and you are so caring. Thank you so much for taking time to talk to me! Achalasia is a very rare motility disorder of the esophagus, so that and GERD and two hernias are the reasons for my surgery.
I know how hard it is to say "no" when someone asks for help, but please, if you don't feel like it, give yourself a pass!!!!
Take care of yourself. I hope we can keep in touch.
How do we recommend a person for an award? I think you should definitely have one ASAP! God bless you!
Hello there Uvamomb, I am sorry to hear of all you have to go through, life hasn't been an easy ride for you by the sounds of it?
Yes I will be here if you need to talk. You are not alone
 

ljimbo42

Active Member
Hi Jim, for some reason I have totally overlooked your latest message to me. I don't know what happened there?
So it's feeling quite hot where you are by the sounds of it? It's still cool here. There is not much flesh on me so I seem to feel the cold more.
Still not received supplements yet. We have had a bank holiday this week so that is probably the reason for the delay.
It's good that you are feeling better with what you are taking. Let's hope once again that it continues. Stock up on the nutricious foods.
I am still feeling quite well. I can't believe it. Just experiencing mild symptoms which I am coping with.
I drove over to the spa this morning and sat in sauna and steam room. I didn't stick it long, it made me feel quite nauseous
What have you been up to today? Anything interesting? Let me know
Bye for now
Mandy
Hi Mandy- I don't know what message of mine you might have overlooked, I think you have replied to them all.:) It's quite hot again here today, 85 degrees and humid.

I'm comfortable though with the A/C on. So good to here you are still feeling well, you must be doing something right!;) Let's hope you continue to feel better as well. My energy has been quite good today, what I am learning though is to take it easy and not burn myself out when I have good energy, so I don't crash. I hear the tortoise won the race.(slow and steady):D

I just recently started eating more veggies, so that's always a good thing. I dug up some old computer parts for a computer today, went online and found the memory I need to get it running, that way I will have a backup if something goes wrong with mine. So you say it's still cool there. What are your seasons like temperature wise? Take care.......... Jim
 

Mandyspike

Active Member
Hello Jim,
hoping you will feel good today. It is sunny here at the moment around 8 degrees but still on the chilly side. It is only early though so it could potentially become warmer later. I hope so. It has been raining the last couple of days, quite grey and miserable. I would love to be in a warmer climate, we all need a bit of sunshine.
I can understand where you are coming from though as the heat where you are would be way too much.
My tablets came yesterday and I took one so let's see what happens. I will let you know how I go on.
Yesterday I managed a short walk to our local library to collect a couple of books. I would at one time walk back home but I felt yesterday that I was pushing myself to much and received a lift back.
I have a friend whom I don't see very much but we email on a regular basis. She does a lot of running and told me that since Christmas she has ran 804 Kilometers. Wow! She is 63. Why can't I do that? It takes me all my time to cover a short walk.
I might be looking after one of my Grandchikdren today. I don't know yet, I am waiting for a call from my Son. I have only mild symptoms this morning so if I stay this way I shouldn't be too bad and able to cope.
You are right when you say about being careful what you do when you have a good day because of burn out. I think that is where I go wrong Jim. Like I have said in past messages that when I am not suffering too badly I over excert myself because I think I am better when I'm not. Yeah Tortoise and Hare is a good example.
You have been occupied with your computer? That is a very good idea backing everything up. You just never know.
I had better get myself up and out of my bed now and do a few odd jobs around the house.
Until the next time
Good Bye for now
Mandy
 

ljimbo42

Active Member
Hi Mandy- 8 degrees, that is chilly.:cool: I hope it did warm up there. Was the tablet that you took methyl-cobalamin? Have you noticed any effects from it? I understand you're frustration with you're physical limits, I have them as well.

I used to be very active and the only that keeps me from getting really down about it, is my hope and my goal to get healthy. There are so many that can barely get out of bed and I use to be one, I am so glad not be there anymore.

One of the interesting things about learning not to over do it when I have good energy is that it just starting happening as I get healthier. So maybe it's not just physical energy that returns, but also the ability to think more clearly- boy do I need that!:D

It's probably about 10:30 where you are now, I hope tomorrow is a good day for you. Jim
 

Mandyspike

Active Member
Hello Jim, yes 8 degrees is rather chilly. It's the same again this morning only it is raining quite heavily.
It has been a wet month for us. Is it still hot and humid in New Hampshire?
Yes it is the methyl cobalamin I have taken. I have not noticed any side effects . It will be interesting to see the outcome.
Because I have not felt too badly of late I am feeling quite optimistic. I do feel that your positivity is rubbling off on me. I know only too well that there are so many people worse off than I. Looking back I have improved enormously since this time last year, I was bedridden like your self and other poor souls.
It is a few weeks now since I had to take to my bed so I have to count my blessings. I am only experiencing mild symptoms. Flu like mainly, not nice but I have to get on with it don't I?
Look after yourself
Mandy
 

ljimbo42

Active Member
Hello Mandy- It's still warm here, but a lot cooler than it has been-it's about 75 degrees Fahrenheit here today- that's about 24 degrees Celsius. You are taking the methyl-cobalamin under you're tongue right- sublingually? I am living proof that you're health can improve. After spending years barely being able to get out of bed, I now am active 3-4 hours a day and still improving.

There are also many people that have improved their health here at prohealth. The flu-like symptoms are the ones I usually experience as well. There was a man that use to come to this forum, his name was Rich von Konynenburg. He did not have cfs/me, but a friend of his did and he was a researcher. So he started researching cfs and realized that autism and cfs had a lot in common.

Then he discovered the work of Dr. Amy Yasko in autism. She found that kids with autism had huge problems with there methylation cycle and therefore creating glutathione. Rich made the connection that cfs/me was also a disorder created by an impaired methylation cycle. He has extensive papers that he has written up on the subject. He was completely convinced that cfs/me was caused by an impaired methylation cycle as am I.

I have spent the last 8 years looking for something that could cause all the symptoms of cfs and an impaired methylation cycle is the only thing I could find that does that. Treating methylation can take a while though, because our bodies are so overcome with toxins, often times we have to settle for slow progress. Like what I am doing right now with a supplement called alpha lipoic acid.

Alpha lipoic acid raises glutathione levels and glutathione moves toxins out of the cells and into the bloodstream. My liver etc. becomes overwhelmed with toxins creating a worsening of the flu-like symptoms if I try to go up on the dose to fast. So have to go very slowly, so I don't feel worse.

What I found I can tolerate comfortably is a 50 mg increase every 2-3 days, so that's what I am doing. I am probably going to need 900-1,200 mg a day and I am only taking 350 mg rate now. So it will take at least another 3-4 weeks for me to get to 900 mg and longer to get to 1,200 if I need to. If some of this doesn't make sense feel free to ask me to clarify it.;) Hoping for another good day for you.:) All the best- Jim
 

Mandyspike

Active Member
Hey Jim you certainly know your stuff.
I have been having a read about The Methylation process which is very interesting and by the looks of it I have a lot to learn. Lowered Methylation can contribute to so many chronic conditionsby cant it? And can also have an impact on ageing. That is definitely one of the reasons to raise this function lol.
I will have to do a bit more research on the topics you have mentioned to help me through this period.
Any information is appreciated.
Yes I am taking the tablets sub-lingually. They don't taste too bad so that's a bonus.
I was reading a brochure yesterday and in it it was advertising a support group for people suffering with Fibromyalgia and CFS. The meeting isn't far from where I live so if I am up to it I will go along and join them.
Another grey day here today. ☔
Have a good day Jim
Mandy
 

ljimbo42

Active Member
Hi Mandy- Yes, methylation is an incredibly complex process in the body. It seems to have a role in most, if not all chronic diseases. One way low methylation can speed up the aging process is through oxidative stress. Oxidative stress in the body impairs cellular processes if it becomes to high. Oxidative stress is something we all have to varying degrees and is kept in balance with anti-oxidants like glutathione, vitamin E and C, as well as others.

Low methylation causes low glutathione and low glutathione causes high oxidative stress. Glutathione has been dubbed the "master antioxidant" of the body. If you google "master antioxidant" all the references that come up are to glutathione. Another thing you will probably read about is how poor methylation causes mitochondrial dysfunction. Mitochondria are tiny parts of cells that create ATP, ATP is the bodies primary energy source.

In fact ATP is the energy source for about 95% of all body processes. We need ATP to breath, walk, do dishes, digest food-everything. When mitochondria are dysfunctional from low glutathione and therefor high oxidative stress. They cannot make enough ATP to give the body the energy it needs to function, creating fatigue and many other symptoms.

As I hope you can see, low ATP can cause numerous bodily dysfunctions, because organs don't have the energy they need to work right. If our muscles don't have enough ATP (energy) then we are very limited in how far we can walk or how much of anything we can do physically. When our brain don't have enough ATP (energy) then we are not able to think as fast or clearly.

When the level of ATP gets low enough from walking to far or working to much we crash or have a flare. The body needs more time to create more ATP so we can have more energy to function at a higher level. If our ATP becomes depleted enough from to much work or exercise, we end up in bed because we just don't have enough energy (ATP) to do any more than that.

There is a cycle "inside" the mitochondria that creates ATP, this cycle is called the "Krebs cycle". Oxidative stress from low glutathione impairs this cycle, and that impairment slows the creation of ATP in the mitochondria, and therefore energy.

I highly encourage you to continue to research methylation, I am a firm believer that knowledge is power. The more we know, the more choices we have and therefore are able to make better decisions with more options.:) Let me know how the cfs/fm meeting is if you go will you? I hope this is helpful to you. Jim
 

Mandyspike

Active Member
Hi Jim, you are early in replying to me today.
I certainly have a lot of reading to do? I will definitely look into it all.
Thanks again
Mandy
 

ljimbo42

Active Member
Hi Jim, you are early in replying to me today.
I certainly have a lot of reading to do? I will definitely look into it all.
Thanks again
Mandy
Hi Mandy - Yes, I did reply much earlier than usual. My energy has been really good today, so I got off to a good start. I hope you enjoy the reading.:) Jim
 

Mandyspike

Active Member
Hey that's great news Jim. I am pleased to hear you have had a more energetic day today.
I hope it will be the same for you tomorrow.
Mandy
 

Mandyspike

Active Member
Hello Jim, have your energy levels still been on the rise? I hope so. Did you have a good weekend?
I have been reading up about the Methylation process, it's all very interesting and from what I have read makes a lot of sense.
I will definitely keep a check on what I eat and drink in future to follow Dr Hymans advice. I drink quite a lot of coffee not realising how depleting of nutrients it is. I will certainly have to cut down on that.
All the food stuffs he does recommend I consume regularly so I give myself a pat on the back for that.
It's sunny here this morning.
All the best
Mandy
 

ljimbo42

Active Member
Hi Mandy- My energy levels are still good with the exception of yesterday. I was still trying to work out how often I could take the alpha lipoic acid I mentioned in an earlier post and I found out, every 3 days is as fast as I can go up on the dose comfortably. I tried going up every 2 days and that's why I was so tired yesterday. How are you're energy levels?

Today my energy has been really high, what a difference a day makes sometimes.:) My weekend was pretty good, how was yours? That's really good that you already eat a lot of the food Dr. Hyman recommends, you would probably feel worse if not for that. Many of the foods he recommends are high in sulfur which is very important in detoxifying the body.

I don't know if you have read this about Dr. Hyman yet or not, but he use to have CFS. He is now completely healthy after treating the underlying cause. It was sunny there this morning, that must have been a welcome sight! If you're wondering where the rain went, look no further - it's now raining here-lol:D Take care-Jim
 

Mandyspike

Active Member
Hi Jim,
Yes what a difference a day can make. You can feel quite well one day then really bad the next. You never can tell. Some days I seem to be doing ok and a few hours later I am back to square one. You know the score.
Do you know I haven't had those horrible sluggish feelings these last two mornings upon rising. I wonder is it the supplements which are helping me? Or would they not work that quick? I must admitt I am feeling so much better at present just very mild discomfort through my body. Not got any flu like symptoms either today, but having said that, I haven't been in any stressful situations recently. I find mental stress can bring on a flare. Fortunately there hasn't been any instances to get stressed about.
Are you never free from your pain?
I have read a little about Dr Hyman. He claims that CFS is one of the most curable diseases doesn't he? That's encouraging.
Like I have mentioned before, I do eat quite healthy but it looks like I will have to make a few more changes.
I love bread very much and also coffee. I do enjoy a beer now and again too but according to Dr Hyman conuming these are a definite No-No. I will have to try and refrain.
What's your diet like on a daily basis? Are you strict with yourself.
Yesterday when I said it was sunny here, the sunshine lasted about an hour then it absolutely poured down with rain which lasted the whole day. It's raining again this morning and still is very cool. 10 degrees c that's all.
Remember when I told you that I was going to attend that FB/CFS meeting today? Well I got it wrong. It's not until the 16th June so I will have to wait. I am looking forward to that.
Wishing you a good day today Jim
Mandy
 

ljimbo42

Active Member
Hello Mandy- I am glad to hear that you are feeling so much better, I feel good today also. What are the supplements that you are taking now? Is it just calcium, magnesium, and methylcobalamin? I know for certain that the supplements I take are what keep me going. I have tried to cut back on them or stop them and whenever I do, I feel much worse within a day or two.

You are right about stress, I think it really makes me feel a lot worse too. My pain varies in degrees, I am never free of it, but there are times when I hardly notice it. I have read that Dr. Hyman believes the cfs is a very treatable disease also. He should know having been on both sides of cfs, both as patient and now treating cfs for several years as a doctor. I agree, that is very encouraging.:)

Yes, my diet is pretty strict for now. Although it has taken me over a year to slowly change my diet to get where I am now. Right now I eat no gluten, very little dairy, no refined sugar (I like honey though), and a low carbohydrate diet, so I am fairly strict.:eek: As I become healthier though I will experiment to see how far I can "broaden" my diet so to speak, to include other foods.

The weather here has been all over the place, it was 31 c here saturday (needed the a/c) and monday it was only 9 c (needed to turn on the heat for a while). You never know where mother nature is going next.:D Hoping you have a good day as well- Jim
 
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