39 replies to this topic

[calmcookie]

Mainman, Fish guts? You're treading on thin ice and making me laugh. You also just wrote in another post that you've written "a few books." Please provide the titles. C.C.

Edited by calmcookie, 10 December 2006 - 08:38 PM.

[*JB*]

Catabolic wasting syndrome (at least that's what I'm calling it) doesn't' seem to care what or how much I eat or what supplements I take, I continue to waste away (probably due to malabsorbtion). I started going to an endocrinologist at UCSF on 11/28 (took 6 months to see him) but he can't see me again until 1/02. In the meantime, any ideas on how I can help stop/slow down the wasting?

Best,

Tom

This may help with what to take and who to see!!! I don't know your resources (money situation) but if it was me, I'd be where the experts are.
<SNIP>
Scientists in San Diego pinpointed the biological chain of events that caused wasting in mice, then identified the same process in liver tissue from cancer patients. They said the striking similarity between the condition in mice and humans will expedite the development of new treatments.

"When we saw that it was virtually identical in animals and humans, we were ecstatic," said the study's senior author, Mario Chojkier, M.D., of the Veterans Affairs (VA) San Diego Healthcare System and the University of California, San Diego (UCSD). "What we've described in animals has much greater relevance than we ever thought to human wasting syndrome. We're optimistic this will bring hope and relief very quickly to the bedside."

Dr. Chojkier and lead author Martina Buck, Ph.D., of VA, UCSD and the Salk Institute for Biological Studies, described the steps by which tumor necrosis factor (TNF) alpha, an immune-system protein, prevents the production of albumin. Low levels of albumin, a critical protein made in the liver, is a keynote of wasting.

TNF-alpha and low albumin had for years been implicated in wasting, but the connection between the two was a mystery. Drs. Buck and Chojkier showed that TNF alpha causes oxidative stress in the liver cell and boosts the production of the free-radical gas nitric oxide. It also causes the addition of a phosphorous molecule to a protein called C/EBP beta, which normally joins DNA in the nucleus of the cell to make other proteins, such as albumin. Central to the researchers' finding was that this extra phosphorous causes the C/EBP beta to shuttle out of the nucleus into the cytoplasm (the cell's external membrane), where transcription from the albumin gene can no longer take place.

"We found that this phosphorylation makes the C/EBP beta exit the nuclear area and go into the cytosol (the fluid in the cytoplasm), where there is no DNA for it to bind with. This means it can no longer produce the protein," said Dr. Chojkier.

The researchers found several ways of stopping the downward spiral caused by TNF- alpha. One way was to treat TNF-alpha-enhanced mice with vitamin E and other antioxidants. This blocked the chain of events leading to the "nuclear export" of C/EBP beta.

"If we block oxidative stress, we normalize everything," explained Dr. Chojkier. "C/EBP beta remains in the nucleus, it contacts the DNA, and proteins are produced. Or, if we block the nitric oxide synthase activity, this also blocks the downstream cascade, and everything normalizes."

Rest at -- http://www.research....ome-1209802.cfm

Edited by *JB*, 10 December 2006 - 09:36 PM.

[snorkels4]

msm, probiotics, benefin fiber, digestive enzymes, nac, alpha lipoic acid, edta, arginine- ornithine, xylitol, dhea??, epa-dha, broken cell wall chlorella, co q 10----------might be a start look at alternatives first and always, but, find someone who know alot about """all, both or any""" options. dont listen to the white coated tunnel vision demigods without a healthy dose of filtering and skepticism

Edited by snorkels4, 10 December 2006 - 10:56 PM.

[vitaminm]

Over the last 15 months I've lost over 30lbs, I'm now 115 (5'11"). The doctors can't find cancer, I'm HIV negative, no blood disease. The cancer doctor I went to said given my history of osteoporosis (which is off the charts for a 54yr old male) and dyspepsia (which wasn't helped by taking PPIs for 6 months, I have chronic acid reflux and small hiatus hernia, biopsy ruled out Barrett's) and other symptoms, would lead him to believe I have celiac sprue disease. So I immediately (3 weeks ago) put myself on a gluten-free & wheat-free diet and started feeling so much better after 1 1/2 weeks. However, the wasting continues (that's what my eyes/mirror are telling me) even though my weight seems to have stabilized, is that possible? Perhaps it takes time for the small intestine to repair after being poisoned for all theses many years. Catabolic wasting syndrome (at least that's what I'm calling it) doesn't' seem to care what or how much I eat or what supplements I take, I continue to waste away (probably due to malabsorbtion). I started going to an endocrinologist at UCSF on 11/28 (took 6 months to see him) but he can't see me again until 1/02. In the meantime, any ideas on how I can help stop/slow down the wasting?

Best,

Tom

http://www.healthlin.....dio Times.htm

[maineman]

Over the last 15 months I've lost over 30lbs, I'm now 115 (5'11"). The doctors can't find cancer, I'm HIV negative, no blood disease. The cancer doctor I went to said given my history of osteoporosis (which is off the charts for a 54yr old male) and dyspepsia (which wasn't helped by taking PPIs for 6 months, I have chronic acid reflux and small hiatus hernia, biopsy ruled out Barrett's) and other symptoms, would lead him to believe I have celiac sprue disease. So I immediately (3 weeks ago) put myself on a gluten-free & wheat-free diet and started feeling so much better after 1 1/2 weeks. However, the wasting continues (that's what my eyes/mirror are telling me) even though my weight seems to have stabilized, is that possible? Perhaps it takes time for the small intestine to repair after being poisoned for all theses many years. Catabolic wasting syndrome (at least that's what I'm calling it) doesn't' seem to care what or how much I eat or what supplements I take, I continue to waste away (probably due to malabsorbtion). I started going to an endocrinologist at UCSF on 11/28 (took 6 months to see him) but he can't see me again until 1/02. In the meantime, any ideas on how I can help stop/slow down the wasting?

Best,

Tom

http://www.healthlin.....dio Times.htm

Interesting Link. I am currently involved in a case where a perfectly health 13 year old girl developed fever, swollen tonsils and large, bilarter, tender aneriror and posterior lymph nodes. She cauld barely speak and her tonsils were so swollen she could hardly swallow her own saliva.



Here parents..one a Harvard grad and successful businessman in the computer business (CAD-Design) and his wife (an artist) were taking her to an "Alternative MD) i.e. someone with an MD degree who was chooosing herbs, and such. The 13 year old girl was getting a compination of supplements from you web site link (sold through MLM-type marketing campaigns) and also "Quantum Nutiriton" products as well.



By the time I saw her she was severly ill, dehydrated hoarse, exhausted, bags under her eyes. SHe had been a happy, successful dancer and school girl.



I immediately diagnosed the OBVIOUS PROBLEM. STREP THROAT. 2 dollars worth of penicllin (derived from a mold, if you must know) and 48 hours there was minimal residual lymhadenopathy.



1. That doctor should be sued for malpractice and put out of business. He almost killed a girl (well, let her die to precise) .



2. Her parent's should be fined, or worse, for child abuse. That little girl may still not be out of the woods for RHEUMATIC disease, the dreaded complication of untreated strep.



Get real, people. LIFE AND DEATH HERE... Caveat emptor. Go ahead... self medicate with fantasy oils and plants all you want. Don't harm your children and please, don't wait so long acting like a bozo before coming to the doctor for the help and care we provide based on science, diagnostic accumen and care. NOT MLM marketing.





mm

[maineman]

No MInd, It's getting late (just got back from San Diego conferences ... still on God knows what circadian rhythm). If you cannot get access to these blood tests, let me know and Ill order them for you. CBC CMETP LIPID PROFILE PSA ESR CRP AMYLASE LIPASE Urnialysis Stool for fecal fat, culture, gram stain and parasites. Lyme Titer (if you've been ANYWHERE near a LYME area) A complete HEPATITIS Profile, with attention to HEP C A "BLOCK THREE" profile (see Foundation for Blood research) This will evaluate the connective tissue disorders and in addition will measure your Anitbodies (immuniglobulins) and Compleement levels. Obviously an XRAY of your chest An ultrasound of your abdomen with attention (detailed) to your pancreas. You should have a colonoscopy. If you had one a few years ago, have it repeated. I'm unclear re: your celiac diagnosis. Rereading your post suggests that the cancer doctor "thought" it might be sprue, but i can't see that you had either the biopsy OR the newrer, more sensitive assay. Please make sure you've had them both. Also, if your uppper GI screen was "negative" you should have a camera assay of your small intestine, but your GI fellow may prefer a "small bowel follow through" first. This set of testig will rule out a myriad symptom complexes but will likely bring you to the source. Again, I can order them for you, if you'd like my assisitance. maineman

[no_mind]

mainman, Earlier I sent a reply to your PM, in it requesting your phone # and a good time to try and reach you, let me know. Thanks, Tom

[securelstmile]

Over the last 15 months I've lost over 30lbs, I'm now 115 (5'11"). The doctors can't find cancer, I'm HIV negative, no blood disease. The cancer doctor I went to said given my history of osteoporosis (which is off the charts for a 54yr old male) and dyspepsia (which wasn't helped by taking PPIs for 6 months, I have chronic acid reflux and small hiatus hernia, biopsy ruled out Barrett's) and other symptoms, would lead him to believe I have celiac sprue disease. So I immediately (3 weeks ago) put myself on a gluten-free & wheat-free diet and started feeling so much better after 1 1/2 weeks. However, the wasting continues (that's what my eyes/mirror are telling me) even though my weight seems to have stabilized, is that possible? Perhaps it takes time for the small intestine to repair after being poisoned for all theses many years. Catabolic wasting syndrome (at least that's what I'm calling it) doesn't' seem to care what or how much I eat or what supplements I take, I continue to waste away (probably due to malabsorbtion). I started going to an endocrinologist at UCSF on 11/28 (took 6 months to see him) but he can't see me again until 1/02. In the meantime, any ideas on how I can help stop/slow down the wasting?

Best,

Tom

http://www.healthlin.....dio Times.htm

Interesting Link. I am currently involved in a case where a perfectly health 13 year old girl developed fever, swollen tonsils and large, bilarter, tender aneriror and posterior lymph nodes. She cauld barely speak and her tonsils were so swollen she could hardly swallow her own saliva.



Here parents..one a Harvard grad and successful businessman in the computer business (CAD-Design) and his wife (an artist) were taking her to an "Alternative MD) i.e. someone with an MD degree who was chooosing herbs, and such. The 13 year old girl was getting a compination of supplements from you web site link (sold through MLM-type marketing campaigns) and also "Quantum Nutiriton" products as well.



By the time I saw her she was severly ill, dehydrated hoarse, exhausted, bags under her eyes. SHe had been a happy, successful dancer and school girl.



I immediately diagnosed the OBVIOUS PROBLEM. STREP THROAT. 2 dollars worth of penicllin (derived from a mold, if you must know) and 48 hours there was minimal residual lymhadenopathy.



1. That doctor should be sued for malpractice and put out of business. He almost killed a girl (well, let her die to precise) .



2. Her parent's should be fined, or worse, for child abuse. That little girl may still not be out of the woods for RHEUMATIC disease, the dreaded complication of untreated strep.



Get real, people. LIFE AND DEATH HERE... Caveat emptor. Go ahead... self medicate with fantasy oils and plants all you want. Don't harm your children and please, don't wait so long acting like a bozo before coming to the doctor for the help and care we provide based on science, diagnostic accumen and care. NOT MLM marketing.





mm

Maineman.,

I think that is an important point. My uncle died of pneumonia because he did not believe in mainstream medicine. He was a Chiropractor. He left two young children one of whom does not even remember him.

When my son was young he was diagnosed with severe visual motor deficits. He couldn't read write or do math and no tutor could seem to help him. He was terrible at sports but always verbally bright. His tracking was the worst our optomitist had ever seen and he was in practice for 40 years. It took awhile (because so many so called experts considered it quackery) for me to address his specific issues with what some consider the uproven science of vision therapy. We have seen unbelievable results. He is the star of his lacrosse team and an A/B student at school without any special help. His performance IQ went up 15 points after therapy. I have friends who had similar problems who are now being medicated for add and still struggling in special ed.

I guess my point is, lets not ever rule anything out but do look to science whenever possible and be diligent in pursuing this from all angles.

I am glad you are helping our friend Tom and I hope he beats this.

[maineman]

se-smile.... I work closely with 2 superb neuropsychologists for my adolescent patients. We are all very excited about the growing knowledge in Non-Verbal Learning Disability, or NLD. These kids are amazing. Some of them score near 100% in verbal skill and appear "smart" but are diagnosd as lazy, or ADD, etc. But after proper testing are found to score near 0% in math or visual skills. Unbelievable. With training (not drugs) we re-teach them how to "see" the world and re-think their non-visual cues and in additiion we go in and teach their parents and teachers how to teach. Unfortunately, this field is still relatively new, so the testing, which takes about 2 days, is expensive and slow. Check out NLD, NOn-Verbal Learning Disability on the web. There are some great resources. mm

[securelstmile]

se-smile....
I work closely with 2 superb neuropsychologists for my adolescent patients. We are all very excited about the growing knowledge in Non-Verbal Learning Disability, or NLD. These kids are amazing. Some of them score near 100% in verbal skill and appear "smart" but are diagnosd as lazy, or ADD, etc. But after proper testing are found to score near 0% in math or visual skills. Unbelievable. With training (not drugs) we re-teach them how to "see" the world and re-think their non-visual cues and in additiion we go in and teach their parents and teachers how to teach. Unfortunately, this field is still relatively new, so the testing, which takes about 2 days, is expensive and slow. Check out NLD, NOn-Verbal Learning Disability on the web. There are some great resources.

mm

Thanks MM, Yes, I know about nld he doesn't fit the description. He really just didn't fit the full profile.

He really presents as a kid with no problems now. You must understand I worked very long and hard with him on various therapies. OT Vt and cognitive training (audiblox) interactive metronome, lindamood bell and even more. We almost did a program called PACE processing and cognitive enhancement but it proved to be unneccesary, my optomitist is on the board of PACE and I think some of his interventions delved into the cognitive realm. We really don't do anything anymore.

I had a friend recently approach me after my son scored 3 touch downs in a recent football game to tell me that my son had everything going for him, and that I was very lucky (he is quite good looking and popular) When I told her of our early struggles she was blown away. Ok, now I am bragging. Sorry!

I think it is great that you are doing this for children. I really have earned the equivalent to my PHD in my son's specific issues with all the research I have done on the subject. I really like to hear that M.D.s are out there helping children with this.