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Chronic Fatigue Syndrome
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Posted 6/11/2007 6:22 PM (GMT 0)
Hi everyone I've just discovered this forum and I'm at my wits end.  My boyfriend has CFS and has had for years, however I can see that recently it's been taking it's toll on him.  I'm really worried and feel helpless, can someone advise me on any natural therapies or treatments I can get for him?  He's feeling so tired, slightly depressed, no motivation, aching joints etc  I'd really appreciate someone who could at advise me on this, as doctors, as far as I've seen, are not much use with such an illness :(

Many Thanks x

Posted 6/12/2007 1:33 AM (GMT 0)

Hi Wizard,

I'm sorry that your boyfriend is so sick. I had Chronic Fatigue for years and took a turn for the worse about two years ago. My life hasn't been the same since. I went to Fibro and Fatigue Center for a while and spend $12,000 only to find myself feeling worse that before I started! Then I switched doctors and found out I have lyme disease so I am working on that and finally feeling better!

This is what I would advise your boyfriend to do. Find a doctor who will do some extensive blood work. There are many illnesses that  could cause fatigue and joint aches. Lyme disease is one of them. Anyone with chronic fatigue, joint pain, muscle pain, depression etc should rule out lyme. I know of 6 people personally who thought they had chronic fatigue, and found they have lyme. A few of these individuals have fully recovered after a few years of treatment. The others are much improved. It's not easy treatment, but at least there is hope of getting better!

Other illnesses that should be ruled out are cytomeglio virus, Epstien barr virus, various herpes viruses, mycoplasma and other stealth bacterial infections. I met several people online who have had great sucess treating virus's with Valtrex and other antivirals.

It is really hard to find a doctor willing to treat "chronic fatigue". There is a lyme board on this site. Check that out. Your boyfriend has many lyme symptoms and this could be a possibility for him.

Posted 6/12/2007 5:21 AM (GMT 0)

What tests have been done and were they done at or sent to reliable locations?

What has been ruled out?

Does he eat and sleep well?  Does he eat nutrious foods? 

I agree that many CFS cases end up being a result of a bactetriologic infection but with the few symptoms that you have provided, there are a gazillion possibilities.

Posted 6/12/2007 12:18 PM (GMT 0)

Sunflower had some good points in that eating well and sleeping are vital for eleviating Chronic fatigue no matter what the source may be.

Some more information to consider, I don't mean to harp about lyme disease, it's just that I suffered needlessly for years before I got my diagnosis. I just had the best 4 days I've had in years. I've been in treatment for lyme since January and am feeling so much better. For some it takes much longer,  so I'm graterfull for feeling so good.

Lyme disease was cited by Reader's Digest as one of the top 10 misdiagnosed diseases. In the article entitled "10 Diseases Doctors Miss", the 10 diseases mentioned were hepatitis C, lupus, celiac disease, hemochromatosis, aneurysm, Lyme disease, hypothyroidism (underactive thyroid), polycystic ovary syndrome (PCOS), chlamydia, and sleep apnea. 1

▲TopAlternative diagnoses list for Lyme disease:

For a diagnosis of Lyme disease, the following list of conditions have been mentioned in sources as possible alternative diagnoses to consider during the diagnostic process for Lyme disease:

▲TopLyme disease as an alternative diagnosis:

The other diseases for which Lyme disease is listed as a possible alternative diagnosis in their lists include:

▲TopMedical news summaries about misdiagnosis of Lyme disease:

The following medical news items are relevant to misdiagnosis of Lyme disease:

Posted 6/16/2007 11:44 PM (GMT 0)
Hello Wizard.

I have CFS. I have had it since 1984 when I caught what they then called the Asian Flu. I have had ups and downs.

I found three doctors in the past 5 years, who all recommended METAGENICS products.

They are high powered holistic antioxidants and vitamins and minerals. They have helped me.

Go to www.METAGENICS.com and first find a practioner near you. You can only buy them through the doctor. Then take a look at the products.

I use a number of things, but the ones specifically for CFS are:
Mitochondrial Rescusitate and Oxygenics. The RED GRAPE SKIN AND SEED is in both, and the OXYGENICS PUMPS UP THE MITOCHONDRIAL RESCUSITATE.

CFS caused a problem in the blood cells where they can not carry the oxygen. So it feels like we have the bends, like no oxygen is in the limbs. Yet when they test oxygen volume there is plenty. We just can't seem to use it. The products I am recommending help this particular phenomemon.

For me it is not in the joints, or muscles so much as the interconnective tissue around the joints. Like the arms and legs, and torso skin areas hurt. Still do, but not as bad, unless I really overdo it. I can walk longer, and have some life now!

If I do anything, that exercises the muscles, carrying, lifting, walking, sitting, standing for any length of time, LACTIC ACID builds up and with CFS people it doesn't go away so easily. It burns like runners burn. It can last for weeks! This gets better with the products.

To make matters worse, when the pain starts in, the brain gets foggy, and memory is a problem. Don't get mad at your boyfriend if he forgets things. It is not his fault!

The two products along with other ginkgo (NIKKEN)"mental clarity" type products, and lots of glucosomine, chondroiton and cetyl fatty acids, omega 3,6,9 etc really helps.

When pain kicks up, I use (NIKKEN) magnetic massagers, and it also helps. (You can give him a gentle massage...GENTLY!!! The Skin areas hurt!)

When the pain is strong I must take Excedrin or something, then all the world is better.

The worst part of CFS is the feeling that your body weighs 1000 pounds. They call it BONE TIRED FATIGUE.
It is not being tired and sleepy. It is not wanting to move anything, at all!
The METAGENICS products took that completely away. It took about 6 months to accomplish this, but I started feeling better in about three days. I had that kind of fatigue for years, and it is now gone!
This is a disease, though, and not knowing the cause, it isn't being cured. If I stop taking the products, it will get worse again.

I still get pain, and deal with it. I get achey, and forgetful sometimes, but not as bad.... and work that out too. Everything is much better. That gives me hope!

I usually don't get depressed, unless something makes me really sad. That is normal. I refused to take drugs or antidepressants. I don't want side-effects or addictions, so I prefer the holistic products.

The best thing now is-- I actually get "sleepy". I never did before. I was tired and exhausted all the time and couldn't sleep! INSOMNIA! NO MORE INSOMNIA! NO MORE FEAR OF BEING TOO WORN OUT TO GO SOMEWHERE.

Now and then, I wake at night and can't fall back to sleep, but I get up and do something.... then I sleep again.

There has been so much improvement in the past 3 years, since I found these (and other) healthy products.

If you need any info, feel free to email me at SugarSugar723(at)yahoo.com.

Sometimes your boyfriend needs to know it is just OK to be who he is, however he is....
You just need to love him.
That goes a long way to help his emotional well-being, and to give him hope. HOPE IS MIRACULOUS!

MOST PEOPLE can get "better" from CFS. CURED? Maybe someday... But the quality of life can get better. MUCH BETTER!

I had EBV 3 times from 1960 through 1999. It didn't cause the CFS. CFS compromises the immune system and any virus that would be normally remain dormant can become active over and over. Some diseases mimic CFS symptoms, but really are other viruses. He should be tested for LYME. It is easier to control if you know what the cause is.
I didn't have LYME.

In my case everything was tested for, and ruled out. Most things were normal. For 10 years no one believed me. Now there are some physical markers.

I wish you both luck!

Candy

Post Edited (Sugarx2) : 6/16/2007 5:47:13 PM (GMT-6)

Posted 6/17/2007 3:29 AM (GMT 0)
Wizard,
Don't know if I can help much but I can tell you what I do for my CFS, Fibro and Myofascial Syndrome... I take 1600 mg of Malic acid in the morning and at night. I also get extra magnesium in a supplement in the morning and in my mulit vitamin in the evening. There are plenty of online sources for these items and they aren't very expensive. My internist who also treats my diabetes has supported my choices of these supplements.

Here's why: Malic acid is necessary for the production of energy in the mitochondria (energy factories) of the cells. Magnesium is also part of the energy production in the Krebs cycle (the name given the cycle of conversion of glucose into energy that uses oxygen). For some reason fibromyalgiacs, CFS'ers and diabetics have deficiencies of Malic acid in the cells, not at the serum (blood) level. By increasing my intake of malic acid I have been able to boost my oxygenation level of my muscles to the point that I can swim laps a couple of times a week and lower my muscular pain levels to the point that I can function.

Now I'm not totally pain free and I'm still sleeping about 10 hours a night but I'm much improved from what I was like before I started the Malic acid. Hope this helps... Oh, and by the way. Malic acid is made from apple skins. It's one of the things that they believe was the start of the "Apple a day keeps the doctor away." saying. LOL!
Posted 6/17/2007 3:53 AM (GMT 0)

Candy,

I really enjoyed reading your post.  There is do much in it that sounds like me.  Do you have some good links on hand about the symptoms that you discuss like:

 it feels like we have the bends, like no oxygen is in the limbs. Yet when they test oxygen volume there is plenty. We just can't seem to use it.

LACTIC ACID builds up and with CFS people it doesn't go away so easily. It burns like runners burn. It can last for weeks!

when the pain starts in, the brain gets foggy, and memory is a problem.  Why is this?  Is it hypoperfusion?

The worst part of CFS is the feeling that your body weighs 1000 pounds. They call it BONE TIRED FATIGUE.
It is not being tired and sleepy. It is not wanting to move anything, at all!

I do this and it feels like I am paralyzed.

Candy, I have Lyme disease and have several positive tests.  But, many, many people test negative when they do indeed have Lyme because the tests are unreliable and it is kind of like hit or miss.  It is very important that Lyme tests are sent to the labs that specialize in that particular kind of Lyme test.  Igenex is the most reliable for one of the Lyme tests.  Did your test go to a reliable lab and are you sure about that?  Your symptoms sound so much like mine.  Lyme can be easy to treat but it can also be very difficult.  I have been ill since about 1994 and finally diagnosed and started treatment about 6 yrs ago and I am seeing one of the best doctors in the country.  I have permanent damage due to this very sneaky, hiding, destroying bacteria.  I totally agree that it is easier to deal with when you know what bacteria, virus or whatever is causing all the pain!  It took 6-7 yrs for me to find out.  It wasn't that I was happy about it or anything but it was that now I finally had a 'reason' for my symptoms.  The doctors could no longer say, "there is not anything wrong with you".

Thanks for the info.

Sunflower
Posted 6/23/2007 6:34 AM (GMT 0)
Hi Sunflower,

I don't have a link about the lactic acid. I do have a copy of the page from a chat line. I got it years ago.
I can send it to you if you send me your email.

I do not have LYME. I got CFS in the original Incline Village Nevada outbreak of CFS, in 1984. I have classic CFS. I have had EBV (Mononucleosis) three times or more- documented.
Since I have been treating with the items I am mentioning, I have had no reoccurrances of EBV.

I treat myself with Colloidal Silver and that kills off VIRUSES, BACTERIAS, FUNGI and PARASITES.

I am now also using ULTIMATE VIRAL DEFENSE and that gets whatever Viruses may be deeply embedded in my system, in places where the silver may not get to, as easily, so I am not getting the "sickly" viral symptoms now.

If I eat or drink yeast, I get brain fog. I treat with AQUA FLORA and it goes away in a day.


So eating well, sleeping well, and treating with these products, and taking about 70 capsules or tablets or gel-caps per day of a variety of healthy products, herbs, vitamins, trace minerals, juices and more keep me getting better.

I was sick for 20 years before I started to see progress.

There is probably damage in my organs, and I am not sure if the damage can be repaired over time or not. I suspect that it can, but it may take years. As long as I feel better this week, than I did last week, I am hopeful!

I do still have pain, like headaches and muscle area aches. I have been sedantary for years. I am only recently trying to get myself up and moving. I have more energy, but as I move more, I hurt more. It is a Balancing Act!

Candy
Posted 6/23/2007 3:24 PM (GMT 0)
I want to thank you all so much for your feedback and advice

, I didnt expect such a response and I'm really grateful to you guys :)  I've not had time to sit and reply as I work long shifts and I'm usually pretty wrecked by bedtime so I'm sorry and hope I've not appeared ungrateful.

The NHS in the UK are pretty useless when it somes to CFS, my partner has tried a number of times to get a GP to listen to him, but was simply thrown anti-depressants, which he refused.  I will look into all the links you've given me, I get paid this Tuesday and so I will go spend some money on some of your suggestions!!  My partner looks a bit better these past couple days, although at times it's hard for me to get out of him how he's really feeling, but I'm not giving up!

Many many thanks to you and I will let you all know next week what I went and bought

I hope you are all well and wish you the very best

Tina :)

Posted 7/6/2007 10:08 PM (GMT 0)

  

Candy:

What helpful information! Thank-you Candy for sharing some remedies you have found to help with your symptoms. I came across this site in search of individuals using Ultimate Viral Defense Plus. I just recently started using it and it is an amazing product. I had been very ill with CMV and MPV virus for over 2 years, began taking Ultimate Viral Defense Plus and feel like I'm back to normal, but it only seems to last for about 1 1/2 weeks, then fatigue and viral symptoms are back unless I increase the number of tablets I take. I am now up to 6 a day and it seems my body is requiring more to fight the viral symptom and the extreme fatigue.  

I was wondering how many tablets a day you take of this product and if you have experienced this as well.

Again, thank-you for so kindly sharing some effective treatments.

te

Posted 10/28/2007 11:44 PM (GMT 0)
I follow the directions on the bottle, or take one in the AM and one in the PM.

Proof that it works. I stopped taking it for a while and I am really tired and feeling achey again!

Candy
Posted 11/8/2007 9:17 PM (GMT 0)
'The NHS in the UK are pretty useless when it somes to CFS, my partner has tried a number of times to get a GP to listen to him, but was simply thrown anti-depressants, which he refused."

Why did he refuse them? I was practically incapacitated with CFS and my GP prescribed me paroxetine. This is an SSRI (selective serotinin reuptake inhibitor) that has a good clinically proven history of treating chronic fatigue. Within a few weeks I was 70% better.

I kept on the paroxetine for about a year then came off it and found my fatigue came back. As luck would have it I got an NHS referral for CBT (Cognitive behavioural Therapy) which is also seen as effective for CBT. The results have been fantastic. My psychologist explained that many people with CFS have problems with perfectionism and depression caused by unreasonably high expectations that they burden themselves with. I was adamant before treatment that I had no problem with this but now see that my thinking was a big problem. I no longer have to "think myself ill" and feel much better.

I'm not saying that none of these alternative therapies work but 10 seconds with google will unearth a number of legitimate double or single blind studies showing a significant treatment benefit from anti depressants and CBT for CFS sufferers. Ive yet to see a single reliable indication of alternative treatments providing much relief. Let alone a cure.
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