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My grandson has been diagnosed with MPGN, Membranoproliferative Glumerolonephritis...His body is rejecting his kidney. They have him on mega doses of Prednisone, but now we have just been given a strep culture result and it has a very high (391) ASO, Antistreptolysine..level...and low C3 and C4...we suspect PSGN, Poststretococcal Glomerulonenephritis. It seems the Primary Care Physician didn't give it to the specialist. The specialist says that they have a negative blood test taken at the hospital...I read that it is detrimental to give cortisone treatment for if it is PSGN...we are just lay people trying to understand a very serious illness...but we have gotten three different diagnoses so far and the poor kid, 5 years old has already suffered through an IV treatment for Lupus..some Chemo that is also used for cancer...but of course..they changed their mind about Lupus now...and have moved on...do you know anything about these diseases......
In Reply to: Nephritis posted by Diana on December 01, 1999 at 21:30:21:
I wrote the above note and failed to mention that my grandson had a chronic intestinal problem long before his kidneys failed..I know there is a connection...but haven't a doctor that knows or really wants to know the connection...I see the immunoglobin IgG mentioned in both instances and wonder about a connection...Also just read a lead to an article about a connection to Strep and a polysaccaride...will try to get the article...in a journal from a Japanese doctor....I want to find a hint on the connection to get SOMEONE to listen....HELP>>>got the child on fresh vegetable and fruit juices...no sugar...no dairy...he is responding well...but the docs don't think they will ever get him off PREDNISONE.....
In Reply to: Nephritis posted by Diana on December 01, 1999 at 21:30:21:
Hi, Diana.
ALL of these you have mentioned are autoimmune conditions. Whether this can be reversed before his kidneys are totally destroyed depends upon your getting expert advice from a thoroughly modern physician AND SOON.
In MY opinion, from what you have said so far, this kid is just being "practiced upon" and is going to pay the price of his docs only seeing the trees and not the forest.
I would suggest calling Functional Medicine Update at (800) 843-9660 and asking them for a listiing of docs in your area who have been subscribers for at least 2 years.
If I knew what part of the country your grandson was from, I might know of someone personally who would give him a chance. The fumbling presently going on will surely doom him.
In the meantime, starting strict "wellness" and beginning the diagnosis of whether LGS and C-RS have anything to do with this would be what I would do if this were MY grandson.
See the glossary for any unfamiliar terms.
Let me know if I can help more.
Walt
In Reply to: Re: Nephritis (Fumbling conventional medical paradigm.) posted by Walt Stoll on December 02, 1999 at 12:50:40:
Just got home and will forward your message on to my son...I am in California, but my grandson lives in Utah...Any help would be greatly appreciated as we are desperate at this time...I cannot believe that the Primary care physician is so laid back...My grandson is on high doses of a dierectic and went very low Potassium...He had edema around the heart but has not been checked for Endocarditis that I am aware of...of course they didn't know about the strep test as it was taken on NOVEMBER 13th sent to N. Carolina and found positive on NOVEMBER 19th and mailed back to the Primary care doctor who filed it away...It was accidently found on NOVEMBER 29 when I requested a blood pressure test because of the blood pressure medicine he is on and they didn't check it when he went in for a shot...The creatinine level is down from 1.7 to .7 on the last test so we have high hopes we are on the right path accidently...He is taking an antibiotic and an antifungal so maybe they are killing something...He is home again...and perking up...but this same doctor has a similar patient that has been on Prednisone for three years and talks like that is the future of our grandson...course he says when these kidneys are gone that he will not be a candidate for a transplant since he rejected his own...the other patient is a little girl...and no one is looking for a cause............Bless you for all your time and for caring...
In Reply to: Re: Nephritis and Leaky Gut Sydrome posted by Diana on December 02, 1999 at 10:51:38:
Diana,
Is the purpose of this exercise to educate the docs or to help the child?
The reason I have so firmly said he needs to be seen by someone competent is that that is his only chance.
Everyone knows that the prednisone is ONLY to suppress his symptoms while the causes progress. NO WONDER his present docs say that he will never get off it. They are doing nothing about WHY he has it.
I see nothing wrong with using the prednisone to get him through till he begins to get a handle on reversing his suceptibilities. The problem arises when that is ALL that is being done.
What happens when the prednisone stops working? His docs will say: "Well we did the best we could."
Walt
In Reply to: Re: Nephritis and Leaky Gut Sydrome (Not directly related but the same mechanisms are causing both.) posted by Walt Stoll on December 03, 1999 at 10:28:43:
Walt (and anyone else here, of course!):
Could you (easily) provide a list of common medicines and how they suppress symptoms while actually slowing (or reversing) healing. I'd like to include a list of these in the Glossary, perhaps both individually and as a list.
I'm thinking of something like:
Prednisone / symptom suppressed / what it really does to the body
Topical Cortisone / symptom suppressed / what it really does to the body (artificially ages the skin?)
Cortisone shots / symptoms suppressed /what it really does to the body
Accutane / oily skin & acne / (multiple dangerous side effects-waaaaaaay too many to list here!)
NSAIDs / reduces pain & inflamation / what it really does to the body
etc.
Thanks!
RHJ++
In Reply to: Re: Nephritis and Leaky Gut Sydrome (Not directly related but the same mechanisms are causing both.) posted by Walt Stoll on December 03, 1999 at 10:28:43:
Yes, that is my concern to...I realize just exactly what they are doing...they even admit it...I believe that Strep is probably what tiggered it...but then something else took his immunity down to do that...First I want him well...THEN I want to tell all those other parents who won't have children to hug if they don't find out...It's a crime I want to stop...I gave the number to my son, but they have an appointment with the specialist this afternoon in Salt Lake so they are going ahead with that..They faxed the Strep results up there ahead of time and they have high hopes that the specialist will listen to them..sigh..These are supposed to be very knowlegable doctors...I don't want to educate the doctors...they will probably never listen..I want to educate the mothers...
In Reply to: Re: Nephritis (Fumbling conventional medical paradigm.) posted by Walt Stoll on December 02, 1999 at 12:50:40:
My son and his wife want to know just who they are calling...education..etc...They are real scared and have reason to be at this point..Two weeks in the hospital..home now with a very ill child and still no definite treatment for cause..
In Reply to: Re: Need help in the Salt Lake City area posted by Diana on December 02, 1999 at 19:57:09:
Hi, Diana.
ONLY a monopoly could deliver a product of such poor quality and still stay in control of the business. This is why I have dedicated my life to breaking that monopoly.
You might start by calling Judith Moore, D.O. and Dennis Remington, MD, in Provo at (801) 373-8500. If there is someone good in SLC, they would know.
Let us know what you learn.
Walt
In Reply to: Re: Need help in the Salt Lake City area posted by Walt Stoll on December 03, 1999 at 12:57:21:
xx
In Reply to: Re: Explain Functional Physicians posted by Diana on December 03, 1999 at 12:52:35:
If I understand your question correctly, you are wondering why Walt would recommend Functional Physicians.
Their web site (lined below) tells a lot about them.
I think that Walt's point in suggesting them (to choose a Dr. out of their ranks) was that doing so would give you the best possible chance that he knows of for you finding a Dr. who can actually help the child by addressing the real underlying causes, not just treating his symptoms.
Here's a little from their site:
The Institute for Functional Medicine is an educational organization dedicated to providing high quality functional medicine products, publications and programs to healthcare practitioners and their patients. Founded in 1993 by noted biochemist and functional medicine founder, Jeffrey S. Bland, Ph.D., IFM is the only organization providing a clinically proven, systematic approach to learning the practice of functional medicine.
Functional Medicine is a science-based healthcare approach that assesses and treats underlying causes of illness through individually tailored therapies to restore health and improve function.
I'd sure prefer to use a Dr. who was actively interested in treating the causes instead of just the symptoms. Wonder if they have one/more around Huntsville AL. Hm....
RHJ++
In Reply to: Re: Explain Functional Physicians - See their website for their explanation posted by RocketHealer Jim++ on December 03, 1999 at 13:23:32:
xx
In Reply to: Re: Need help in the Salt Lake City area posted by Walt Stoll on December 03, 1999 at 12:57:21:
xx
In Reply to: Re: Explain Functional Physicians - See their website for their explanation posted by RocketHealer Jim++ on December 03, 1999 at 13:23:32:
I just wanted to mention something I found at their web site in their Technical Bulletins (yes, I had to register with them to get in there).
They have a Tech Bulletin called "Remove, Replace, Reinoculate, Repair; The 4R Gastrointestinal Support program.
Sorry I could print it, but not copy it. Their security was beyond my poor powers.
Anyway, in the Remove section, they talk about removing pathogenic microflora and/or parasites as the same time they talk about removing foods from the diet to which a person is allergic, sensitive, or otherwise intolerant.
They talk about an oligoantigenic diet that sounds a little like the E-Diet. They talk about eliminating dairy and gluten-containing grain and cereal foods as being the most common food groups possessing allergenic activity. They talked about doing all these in the same paragraph, so I assume they mean that in their program you address them both at the same time. This is a middle ground between our two recent camps of discussion on treating parasites first or last.
If you are at all interested in this article, I suggest you go register with them and read it for yourself.
The one thing that struck me in this article (Technical Bulletin) is that they seem to have no clue about Bracing or LGS, so SR is never mentioned. So it seems they could be treating the patient's gastrointentinal symptoms forever.
Perhaps that's their real intent, since they sell supplements. If the patient were completely cured in 3-6 months, or even in a year, then where would the continuing supplements sales come from? They would have to find and "train" a new set of patients every 3-6 months, instead of having good regular customers for "life". :-)
RHJ++
In Reply to: Re: Suppressing symptoms while the causes progress - or miraculously get healed? posted by RocketHealer Jim++ on December 03, 1999 at 10:40:54:
Really! RocketHealer Jim!
The books that explain what you are asking are each several inches thick and include Biochemistry, Pharmacology, Physiology and Bacteriology texts. Only by integrating what they all say could I answer this.
I like to say that docs have promoted the fiction that only THEY can understand stuff like this and the public will just have to defer to us. HOWEVER, it does finally come to the place where the little bit of truth is found and this is one of those places.
I can give you a few very simple statements but they, of necessity, will be just vague shadows of the truth. The REAL truth is that no one knows this fully.
Prednisone reduces inflammation as ONE of its many functions. Inflammation is one of the essential mechanisms the bodymind uses to protect and heal itself. Since many of the unpleasant symptoms we experience come from the inflammation it is too seductive, for docs mainly interested in short gain, to avoid using it. SO, suppressing that function eventually is contraproductive.
Of course, entire books have been written about the mechanisms of action of cortisone and all of those are screwed up when prednisone is taken for any length of time. I see nothing wrong with using cortisone for the life saving effect it can have. MY complaint is that when it is used INSTEAD of looking for WHY the problem is there, it is always eventually contraproductive
NSAIDS are a LOT better understood than cortisone--mainly because they are a LOT simpler molecules and are not made by the body for any other function. However, even there we are woefully ignorant about what they do. Aspirin, as you know, was used for at least 200 years (some say 5000 years) without having the least inkling how it worked. It has only been in the last 20 years that we even began to understand that NSAIDS did something with the prostaglandin ratio that has to do with inflammation & clotting.
ANYONE in the field would say that we are only beginning to scratch the surface of understanding even these "simple" substances as they effect physiology.
It has been known for 50 years that people who took aspirin had measurable blood in their stools. It seems that the lining of the gut had to be damaged so much that it bled before we could think that any damage was being done.
Anyone knowledgable now understands that LGS is radically influenced by any NSAIDS but, so long as the "system" makes no money by recognizing the central issue of LGS, they will not take that seriously.
I know I am not answering your questions but I think, short of getting a degree in the integration of these massive subjects, they are unanswerable.
Help?
Walt
In Reply to: Re: Explain Functional Physicians posted by Diana on December 03, 1999 at 12:52:35:
Diana.
Ask them. These are all board certified MDs or DOs. Their problem is that they are the cream of the crop and are far ahead of where the rest of the professionn will have to be in 20 years.
The problem is that many people can not wait that long for results.
Walt
In Reply to: Re: Suppressing symptoms while the causes progress - or miraculously get healed? Archive, where? posted by Walt Stoll on December 04, 1999 at 09:47:23:
The kidney specialist now that he finally is aware of Strep is cutting back on the Prednisone (level of 40)My son is going to call the doctor in Provo on Monday..They are giving him an antibiotic and an antifugal for now...Hope we can get an appointment soon...He is on mega diuretics...maybe they will cut down on them when they get the blood test they just took yesterday..sounds like the primary care doctor didn't send the lab from last Friday with a drop in Creatinine.....Prayers and miracles keep this kid going.....
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