Cfs

Symptoms & Treatments
1

Hi Every ONE

THIS i'M AFRAID IS LONG BUT PLEASE WATCH THE VIDIO TO THE END. YOU WILL BE GLAD YOU DID. THEIR IS HOPE OUT THERE. THIS DOCTOR AMOUNG MANY, BELIVE WE ARE GENUNLY ILL.HE ALLSO MENTION A SIGHT TO VISIT AT IS CLOSE TO THE END OF HIS TALK.I AM GOING TO CHECK IT OUT NOW. HOPE THIS HELPS ALL OF YIU

SHIRLEY

AKA

S L M

STANFORD'S DR. JOSE MONTOYA - CFS / INFECTION CONNECTION

From a reader--

http://www.youtube.com/watch?v=Riybtt6SChU&feature=youtube_gdata_player - Snippet: "Chronic Fatigue Syndrome (CFS) is a disorder that causes extreme fatigue that is unchanged with rest and which interferes with one's ability to attend to daily activities. Dr. Jose Montoya discusses CFS and current research regarding diagnosis and treatment and the possible CFS-infection connection."

FROM DOM: This is a wonderful video! This doctor understands CFS as a REAL disabling disease with sleep problems, incapacitating fatigue, brain fog, etc. He says that CFS is a bad name for this illness, and that CFS is a nightmare that often begins with a viral illness. Watch this doctor's talk! It's great! He has such sympathy and understanding! He talks about how patients can tell him the exact time when their CFS began, down to the exact day or cause - generally infection. CFS takes away the functional life of a person. Rest does not alleviate the fatigue. They lose their professional and social activities. The neurological symptoms are hard to put into any category. I'm still listening to Dr. Montoya's talk, but couldn't wait to tell my fibro friends about this great video!

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Dominie Bush

www.fms-help.com - FMS/CFIDS homepage

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2

Hi Again

This is the sight for more information of C F S. Some of you Americans might be able to join the clinical trials. Good luck and hugs.

Shirley

A KA

S L M

http://med.stanford.edu/news_releases/2007/january/montoya.html

3

So, is it CFS or Fibro, or are they really the same - with CFS manifesting more on the fatigue level while Fibro registers more on the pain side of things?

Don't quite understand why, since the treatments for each disorder are so similar (tho' diverse), that they're not just lumped together.

Anybody know?

4

Hi Shirley!

I listened to the entire presentation. Thank you for sharing this with us. My lasting impressions of this were, firstly, what a wonderful man. Don't we wish he could take care of us, he refered to these patients as, a woman, a wife, a mother. There was great value placed on the patients, and I was especially moved when he talked about the relief felt with validation. The Dr telling them that there was really something seriously wrong, it was not imagined, not made up, and how much better just that made them feel. He very nicely tells his colleages that the buck stops with them to diagnose and validate these chronically ill people. He then goes on to apologize that the medical community does not yet have the tools to properly diagnose this disease before a 6 month wait, but is ever working for this to improve.

I was then most impressed that he pointed out that they were often labled as just being depressed, but that as Drs they must realize that the patients with CFS are depressed because their lives have been taken from them. This is true with all chronic diseases, I believe.

Here is the medicine he refers to http://en.wikipedia.org/wiki/Valganciclovir Lets hope it is a good step to irradicating this illness from the planet.

I was surprised to see the herpes virus (HHV6) mentioned with the EBV. I did not know it was part of CFS.

The entire way through I thought this sounds like autoimmune disease, I do not have CFS, but do have several autoimmune diseases, I was correct, as he later went into his thoughts that it is am immune response to this virus that hides within the cells, then when treated it retreats and hides again, finally stating that he believes it is the immune response to the virus that is making them so ill.

Oh yes, the physical therapy, the psychological therapy, water therapy, cognitive therapy, haven't we all been told this, been through this, nice to hear that it really only does make one a little better for a short time, but does not help long term, and is not the cure, AND that all of these can lead to a 'crash'!

How reassuring to know that it is people like this man who is more than just a lab tech, he is a healer, who is looking at the person, the mother, the wife, the sister, daughter, bringing their value into consideration, with a deep committment to finding the biomarker and making you truly well.

I am most fortunate, my Rheumatologist is a Professor of these studies of Rheumatic diseses, and a Physician, and he also is good natured, well mannered and kind, placing great value in you as a person, who sees the greater picture of what chronic disease means, not only under the microscope, but in the valued human being. My only hope is that everyone can find such a Dr to care for them.

This is such a value to all of us, thank you very much for sharing this with us, Shirley!

Wishing you well,

SK

5

you are so welcome,SK

and I took the information as for fibro as well.

S L M

6

My Rheumatologist explained Fibromyalgia as being CAUSED by chronic pain, (meaning there is an underlying injury or disease) this chronic pain changed the brain until our entire body is in pain. (back to the Substance P) He goes on to say that by treating the CAUSE of my pain, Psoriatic Arthritis is the primary disease of mine, he is aleviating the Fibromyalgia. Makes sense to me, when the arthritis is calm, so is the Fibro!

http://en.wikipedia.org/wiki/Substance_P

7

SK,

Thank you so much for the extra info relating to Shirley's post about CFS.

The Wikipedia links were interesting and helpful but, best of all was your simple explanation of the causes & treatment rationale given you by your Rheumy.

Suz

8

That is his opinion as a Physician, a researcher, and professor, that fibromyalgia is caused by chronic pain, therefore secondary to something else, so also being an Internist, he is a master diagnostician. (spelling?)

He then looks for the cause, and continues to look. You fill out a questionnaire each visit. He doesn't miss a thing, though he is careful not to overload me by telling me too much at once.

By the time I got to him Sjogrens had finally shown up on my bloodtests, it took several tests for it to show as false positive, meaning it would eventually show up positive, and it had. But it was secondary as was the Rayanuds, to the Psoriatic Arthritis.

He told me that fibro is not a disease, it is a condition, caused by chronic pain, this chronic pain changes the brain until every part of your body is in pain, even if the cause was a severely injured hand, especially if this hand is not properly treated.

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One artical I read said ,fibto is not a disease it is a sindrome.

Shirley

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Shirley,

Thank you so much for posting the video of Dr. Montoya. My doctor was just mentioning him the other night when I attended his weekly lecture. I hope everyone views the video because I know I have thought all along that fibro is not in itself a disease, but that it is secondary and that it is a syndrome. Several of my doctors have been telling me that for years, but most patients are not aware of this. I hope and pray that the funding will be there so that doctors like Dr. Montoya can continue on with the studies.

He was very up front about the fact that some virus stay in the system forever, but that they are working on finding a way to get the effect of the virus under control. I hope they can. The other thing that he talked about was cytokines. I've had testing and I do have one IL-8 that is elevated, which is one that is a pro-inflamatory cytokine that plays a role in recruiting and activating neutrophils. Dr. Montoya mentions the neutrophils. He mentions the genomes which are part of our genes and researcher have whole new science of epigenetics where they are studying how these genomes can be turned off and on.

I am reading "The Autoimmune Epidemic" and one thing author mentions is that they found most Lupus patients have a history of EBV.

Thanks again for the video! Keep praying for the doctors, that's all I can say.

Ally

11

You are correct Shirley. I have read this and have also been told this by a doctor. I am sure if I had the time, I could find the technical definition of a disease and why fibro is not a disease but I am wasted tired- so sorry! I really wish I had more time to spend looking stuff up but there is just too much info and not enough time! LOL Whether it is a disease or syndrome doesn’t matter a whit to me- it still hurts!

12

This EBV thing is scary, it leading to these other diseases and syndromes. Upwards of 90% of adults age 30 or so and above in the US have the EBV virus in their system. It usually only causes problems when you become symptomatic and then you have what is commonly referred to mono. It is very scary to think that millions and millions of people already have what might be the precursor to these autoimmune diseases.

13

HI EVERY ONE

I HAVE ALL WAYS BELIVED I HAD A LOW GRADE INFECTION. AND I HAVE TOLD MY HUSBAND THAT. i SUFFER FROM YEAST INFECTIONS PEROIOTICLY. ALL SO I UNDERSTAND THAT DANDRUFF IS A FORM OF YEAST INFECTION. I DO BELIVE IT CAN EFFECT YOUR WHOLE BODY IN ONE FORM OR ANOTHER. YEAST INFECTIONS AS YOU KNOW THEY ARE NOT EASY TO GET RID OF. THEY REAPPEAR WHEN YOUR RESISTANCE IS LOW.AND OVER THE YEARS I HAVE LEARNED TO BE VERY CAREFUL TO WASH MY HANDS AS NOT TO SPREAD IT. DOSE ANY ONE ELSE BELIVE AS I DO ?

SHIRLEY

14

Shirley,

I've been under treatment for systemic yeast infection, still am. This, many times, goes along with the leaky gut syndrome, autoimmune disease etc. It's all part and parcel of it. It's insidious in nature and lots of times can't even be detected on labs, but it wreaks havoc on your whole system.

I've started discussion on the yeast/candida. You can look them up. It's not uncommon. It's part of the autoimmune problem. Others on the forums too deal with it.

Ally