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Fighting CFS with GSH and More......

Hello everyone, I'm Lisa, the daughter that Sue writes about in her blogs. I wanted to take a minute to share with you how things are going. I've gone from being so tired I could hardly function to being able to actually enjoy life some now. I was so tired and in a fog that even the simplest things like speaking or texting was too much effort. I had just about stopped functioning. I still have ups and downs, but we are definitely making progress. I knew I was in bad shape but did not realize just how bad of shape I was in until I started feeling better. CFS is some really bad stuff as some of you well know. I don't know where I would be had it not been for my mom taking "the bull by the horns" and finding answers because I had given up. She is an amazing person.
I am still taking all the things she has already spoken about including the bioactive whey protein, but we have recently added Acetyl L-Carnitine and Phosphatidylserine (PS for short) which is recommended to be taken together and I can really tell a difference. We are also in the process of trying to add foods that contain Tryptophan to my diet naturally because I have not had my amino acid levels checked yet. To do that I eat a hard boiled egg every day. Oddly I missed it one day and on that same day I got tired in the afternoon. Coincidence? Don't know but you can bet I don't miss my egg now!

Hi it's Sue again,
In addition to Lisa's update.....................

Carnitine is an amino acid you make from the essential aminos lysine and methionine. It is found in meats, especially beef, pork, and lamb. There's virtually none in plant foods. It is needed in the form of acetyl-l-carnitine to produce the neurotransmitter acetylcholine, which in turn plays an important role in memory and overall cognitive ability. *If you have a heart condition, discuss carnitine with your doctor before you try it.

Tryptophan is one of the nine essential amino acids. Your body uses half the tryptophan it gets to help make the thousands of complicated proteins that keep you running. The rest is converted to niacin. Some food sources for tryptophan are: beef, chicken, turkey, tuna, salmon, avacodos, bananas, cheddar cheese, corn, cottage cheese, beans, dates, seeds and EGGS.
One large egg contains ALL the essential amino acids and many of the nonessential ones as well, including cysteine, glycine and glutamic acid ---- the building blocks for glutathione. In addition they are an excellent source of dietary sulfur. One large egg contains 82g of sulfur. Egg yolks are a natural source of vitamin D. But, they also contain cholesterol. *Caution, tryptophan supplements can interact with anti-depressants, seek medical advice before taking this amino acid.

What depletes Glutathione (GSH)?
Poor diet, toxins, medications, stress, trauma, aging, and radiation. Along with the ever increasing need for glutathione as part of various processes in our bodies -- food for our immune system, recycling vitamins, repairing our DNA, and protecting our cells from oxidative stress.
The liver is our bodies largest internal organ, weighing about 3 pounds. It stores and produces energy, regulates hormone levels, removes old red blood cells from our system, and stores vitamins and minerals. It also removes metabolic waste and poisons. If the liver gets overloaded and damaged, it is unable to do it's job of detoxification. Ailments and disease begin to overwhelm us if the immune system is under constant stress and not supported.
Glutathione circulates throughout your body, corralling unwanted toxins wherever it finds them, not just in the liver. Low glutathione means that the prescribed treatments, instead of helping, may actually aggravate the condition since drugs cause further decline in glutathione levels. Raised glutathione levels increase strength and endurance and shift metabolism from fat production to muscle development. Some foods high in Glutathione are: asparagus, cantaloupe, grapefruit, peach, potato, spinach, strawberries, tomato, watermelon, zucchini, eggs, broccoli, cabbage, brussels sprouts, cauliflower, kale, parsley, walnuts and fish oil, along with whole grains.

My husband and I have been taking the bioactive (bonded cystiene) whey protein for several weeks now and have noticed a good increase in energy, but more noticeable a dramatic increase in vision clarity.

Thanks to xrunner, whodathunkit, aquariusgirl, ahmo, and sarah darwins for kind words and support.
Likes: ahmo

Comments

Con't: ME is not only an invisible illness but a much maligned one by many Dr's. Did you first try to get help from your Dr without success or did you choose to research early on? As you know ME is multisystemic and attacks different systems in different people.

This makes it difficult to know if something you've tried might work for others without knowing what specific symptoms were being treated with what supplements. Fatigue for example in ME can be from a variety of reasons, insomnia being the most obvious but also from Orthostatic Intolerance which many people with ME have, or even just overexertion. You have only mentioned a few of your symptoms perhaps? It would be useful to understand what you are healing. So many of us suffer with a multitude of symptoms neurological, hormonal, cardiac, gastrointestinal, autoimmune etc.

So welcome to the community Lisa and Sue. Just FYI there is also a forum section with a thread for introducing yourself where you could talk more about your journey toward healing.

Your contribution would add to the community.
 
Hi Lisa
It's encouraging to hear that you have the support of family and the resources to pursue various products to try and heal from ME/cfs.
And apparently you are having success. So you must be feeling pretty good about that. ME can be such a hugely dibilitating disease. Many people suffer additionally from disbelief from the medical community and family. So you are indeed fortunate. And you persevered and found something that works. This must be a huge relief.

Many of the supplements you mention have been discussed here at length in various threads. Some others here I believe have also experienced some measure of success with some of these products.

It's unfortunate that you only found PR toward the end of your journey with ME. It would be very helpful to some here I think if you had been able to provide details along the way toward healing. Many people try something and find that they are very sensitive to it. It seems the path to even minimal healing with this illness is fraught with trial and error from which we learn from each other by sharing our stories.
 
Snowdrop, Thank you for reading our blog. I only started self treatment after a year of going to doctor after doctor and tests after tests only to have them throw their hands up. None, and yes I mean NONE, of them were able to offer me any help at all. I was totally left on my own to just continue to suffer with no hope of any kind. If you will please read Sue's first 2 blogs she describes more of what my symptoms were and how we progressed. But some of my symptoms were/are depression, extreme fatigue, brain fog, loss of memory, muscle weakness and aches, blurred vision, balance issues, shortness of breath, heaviness (like I was carrying another person on my back), and sleep issues. I also had zero tolerance to any stress or physical activity. I could feel myself being drained of what little I had. Our hope is that someone out there like myself will find a little ray of hope that there is a resolve out there and to tell them to please don't give up. There is hope.
Lisa
 
There are thousands of us here. Many, many of us have hope admittedly alternating with despair at times too. There is also real hope of proper medical treatment with drugs like Rituximab being trialled and for biomarkers for this illness being found so that the psychosomatic beliefs about the illness will be put to rest. Again, the treatments you mentioned are being discussed on many threads here.
 
When I started helping my daughter fight CFS, she was in bad shape, ready to go to bed and pull the covers over her head. No one offered any help, just take a pill and go away. I'm not up to date on all the latest drugs, I'm not even sure drugs are the answer !!! We just started with giving her body the basic needs, and we're working up from there, so far we're doing OK. I know answers are needed that's why we're sharing what has worked for her, in hopes it will help others find some comfort. I'm not great with computers, but I feel strongly about helping others anyway I can. So I'll do my best to keep up. Thanks to all of you for sharing your concerns .
 

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