I am about to suggest a friend, who has just been diagnosed with pemphigus, take a combination of pycnogenol and shark liver oil. I hesitate, though, for one reason. While I am confident the pycnogenol would help her, I am concerned about suggesting an immune booster like shark liver oil to someone whose immune system is already in overdrive.
I see data on the 'Net supporting the use of shark liver oil in cases of lupus, which is a cousin to phemphigus (if I understand the two correctly), so perhaps this would be a correct suggestion after all. I don't know...I need an enlightened immunologist!
My husband works in cancer research at a major research institution. His mother's squamous cell lung tumor DISAPPEARED after one year on the pycnogenol/shark liver oil combination so my husband is looking into this as a possible project for the near future. We have recommended this combo to others with very exciting results. But to a person with an autoimmune disorder? That may be a different story.
What do you think? Omit the shark liver oil?
Follow Ups:
Pemphigus/Steve Shapiro is knowledgeable
Posted by wendy on November 29, 1998 at 21:43:24:
In Reply to: Autoimmune disease/shark liver oil posted by Renee on November 29, 1998 at 02:25:39:
Renee:
please go to the www.dadamo.com page. On that page you will
find linked to it Steve Shapiro's page. Steve has
Pemphigus and knows all you will ever need to know about
it I am pretty sure. He has done a lot of work and is
treating himself with quite a lot of good success I understand. Good luck in your search. Let us know how you get on.
wendy
Follow Ups:
Re: Autoimmune disease/shark liver oil
Posted by Walt Stoll on November 30, 1998 at 09:30:18:
In Reply to: Autoimmune disease/shark liver oil posted by Renee on November 29, 1998 at 02:25:39:
Dear Renee,
I agree with Wendy.
Also, I have had reliable success with serious wellness, alone, resolving pemphigus (which Steve will tell you about also).
As you likely know, wellness improves the immune system too and is perhaps the most powerful immune booster we know. The problem is not an overactive immune system even though temporary benefits may be experienced by immune suppression.
Your friend would be best served by becoming an expert in how this works. I have seen no cases that did not clear IF the person would become a student of the condition from a "holistic" viewpoint.
Finally, using adequate doses of essential oils would help ANY skin condition. See my homepage about that. It is likely that the omega 3s in the shark liver oil would benefit this condition a little in every case & a lot in a few.
In the end, this is a primitive way to address this and will help some people even though. Those with the condition are usually willing to learn about it enough to resolve it since it is such a terrible condition.
Udo Erasmus, Dr Pelletier's and MY book would be good places to start. They are all mentioned prominently in the archives on this subject.
If your friend has more questions after getting the above information under her belt, have her ask them on this BB so others will benefit from seeing her get over this "incurable" (from conventional approaches) condition.
Walt
Follow Ups:
Multiple stages of understanding
Posted by Steve Shapiro on November 30, 1998 at 12:37:51:
In Reply to: Autoimmune disease/shark liver oil posted by Renee on November 29, 1998 at 02:25:39:
Hi Renee,
Welcome to the wide, wonderful and sometimes wacky world of natural medicine. Being personnally confronted with a life threatening illness is radically different than reading about it in a journal or newspaper article.
One of our first responses is to do something that I call "Throwing things at it." Briefly, we have been conditioned by traditional medicine and much natural medicine that when we develop an illness, we 'do something' for it, meaning that we take a pill, injection, or surgery. These are natural responses, and some people even respond favorably to them.
The problem with this approach is that there are an infinite number of things to throw, and each of them costs real $. If your friend is lucky, she may receive benefit.
If she's like me, with each remedy she tries, the only thing that will happen is she will get sicker and poorer.
It was not until I started to understand my own bio-individuallity and treat myself appropriately for somebody just like me that I started to improve. It's a long, slow agonizing process.
To compound the difficulty, there are numerous theories as too exactly what bio-individuallity is. I've responded to the choosing foods by blood type modality. Others have responded to genetic/metabolism based diet choice.
The final key of understanding is willingness to observe and change.
Given her current state of health, is she willing to accept responsibility for it? If so, is she willing to change something? Does changing something improve or worsen the illness? If it improves, then she is doing something correctly. If she worsens, then something else needs to change.
This is a dynamic process. Sometimes it feels "like you are jumping out of the frying pan and into the fire."
As somebody living with pemphigus who has been through all this, I can testify that it can be done.
I am available to speak with your friend, if she so desires. If she does not have internet access, please e-mail me and I will provide my phone number.
best wishes,
steve shapiro
PS: Thanks to Wendy and Walt for responding to this. I'm not getting out on the net as much as I would like to - too many 'real world activities' keep popping up.
Re: Multiple stages of understanding
Posted by Renee on December 01, 1998 at 00:02:03:
In Reply to: Multiple stages of understanding posted by Steve Shapiro on November 30, 1998 at 12:37:51:
Let's see...where do I start?
First, I did not just read about autoimmune diseases in a journal or newspaper article. My son has lived with an autoimmune disease for ten years. We almost lost him when he was two years old. I am intimately acquainted with people trying to help with suggestions, though I never quite developed the cynical attitude that they were "throwing things at me". My philosophy was that if it helped them, it might help my son, so - within reason - I tried everything. I was desperate. What finally worked was pycnogenol and a modified diet. I would not be much of a friend if I had this knowledge and did not share it with my friend, would I?
Secondly, I would never, ever suggest to my friend that this pill would cure her once and for all. I do not believe in a magic bullet anymore. That naivete disappeared the first time my son's absolute neutrophil count hit 92 and I realized that his doctors were out of bullets.
Of course she must take a holistic approach. I sort of thought that was a "given". Sorry...I should have mentioned it. I had already printed out your page that had the name of the book by Peter D'Adamo on it so she would know what to look for in the bookstore.
And third, thanks for the link to your home page. I've been there and found it interesting. I even asked you your thoughts on taking pycnogenol as a sort of protective measure, in addition to eating and living healthfully, and you replied that different things work for different people.
Okay.
Here's how I see it: Pycnogenol a natural compound that helps to rid our bodies of toxins. If we are going to live in a world full of more man-made chemicals than we have evolutionarily been able to keep up with, then I think we are, all of us, going to have to do something on a daily basis to prevent those chemicals from harming us (as best we can).
Avoidance of toxins, healthful eating, stress-reducing techniques...these are all going to have to be part of our program. But I believe that the addition of pycnogenol (or other free-radical scavenger/heavy metal chelater) to the diet should also be part of the program - across the board, for everyone. Perhaps we will just have to agree to disagree on this point.
Thanks for responding. I'll pass your offer to talk to my friend on to her. That's very generous of you. I will also pass a hard copy of our transmissions on to her via snail mail and hopefully she will be able to contact you.
Thanks again,
Renee
-Renee
Follow Ups:
Re: Pemphigus/Steve Shapiro is knowledgeable
Posted by Renee on December 01, 1998 at 00:20:13:
In Reply to: Pemphigus/Steve Shapiro is knowledgeable posted by wendy on November 29, 1998 at 21:43:24:
Wendy,
It's a great page, thanks. I'm looking forward to reading the book and have passed this info. on to my friend with pemphigus. Will keep you posted.
Renee
Re: Autoimmune disease/shark liver oil
Posted by Renee on December 01, 1998 at 00:48:13:
In Reply to: Re: Autoimmune disease/shark liver oil posted by Walt Stoll on November 30, 1998 at 09:30:18:
Doc,
Thanks for responding. I hesitated to recommend shark liver oil because of the warnings I heard when my son was suffering from repeated episodes of neutropenia about echinacea. Now I know echinacea and shark liver oil are two, different things, but I was concerned about the principle of not giving an immune-booster to a person with an autoimmune disease. Thanks for clearing that up.
This is off the shark liver oil subject, but in the past two years that my son has been on pycnogenol and a modified diet, he has not had one bout of neutropenia. Not one. We didn't even give him the pyc because of the neutropenia. We gave it to him as an alternative to Ritalin. What a wonderful side effect!
Our family doctor was so impressed with our case, and the effects pyc had on some of her other patients, that she had a cardiologist in Houston, Dr. John Passmore, give a grand rounds lecture on pyc to her residents. He uses pyc in his post op cardio clinic.
I even went to see her once with a book by Andrew Weil in hand and she wondered out loud how a physician could do some continuing ed courses "in that stuff".
There is hope. You're a pioneer. Sorry you have suffered as you have.
Thanks again for answering my question.
Renee
Follow Ups:
Re: Autoimmune disease/shark liver oil
Posted by renee on December 01, 1998 at 01:13:28:
In Reply to: Re: Autoimmune disease/shark liver oil posted by Renee on December 01, 1998 at 00:48:13:
Heavens! Look what I just found on the Colorado Health Net page(www.coloradohealthnet.org/index.html):
7.Question: I have been diagnosed with MS - I am 48 years old. Am now taking Avonex shots once a week. I have heard Pycnogenol and shark oil do help somewhat. I do take vitamins at the moment and they seem to help. However, I want to try both of these new items. I want to make sure they don't react in anyway or cause problems with the Avonex.
Answer: Your question concerns whether or not Avonex can be safely used with medications such as pycnogenol and/or shark oil. In a general statement, I would have to say that the use of pycnogenol and shark oil have no documented benefit for helping the disease process of multiple sclerosis or symptoms of multiple sclerosis. Most of the information is private testimonials without any scientific-based evidence to support claims that they are helpful in multiple sclerosis.
Pycnogenol in general is an immune enhancer with documented animal evidence that, it can help in immune deficiencies. As multiple sclerosis is an autoimmune condition with an overactive immune system, to stimulate it further with treatment such as pycnogenol, I believe, would be potentially detrimental and counter-productive for a person taking Avonex.
Although these decisions for the use of pycnogenol and shark oil fall outside the realm of medical practice, I do encourage you to investigate these at the highest level of data available and make your decision. I certainly would not rely on company literature for these treatments. Multivitamins, especially if they have an antioxidant potential such as vitamins A, C, and E, may be helpful, although they have never had documented proof inmultiple sclerosis.
Ronald S. Murray, M.D., President and Medical Director, MS Center, Denver, CO
Jeepers! -Renee
Re: Multiple stages of understanding
Posted by Walt Stoll on December 01, 1998 at 11:43:25:
In Reply to: Re: Multiple stages of understanding posted by Renee on December 01, 1998 at 00:02:03:
Hi, Renee,
This is precisely the reason I wrote my little 200 page book. Thinking DIFFERENTLY is the first thing that is needed. THEN, the person needs to be given resources with which to implement that new way of thinking.
As you had to learn the hard way (Possibly the only way any of us learn.) more of one narrow way of thinking (the allopathic paradigm that is still trying to force the "health care camel through the eye of the allopathic needle") is rarely going to resolve ANY chronic condition.
Steve's offering is EXACTLY what is needed for anyone to begin to understand the complexity of resolving this kind of stuff.
Walt
Re: Multiple stages of understanding
Posted by Walt Stoll on December 01, 1998 at 11:48:19:
In Reply to: Multiple stages of understanding posted by Steve Shapiro on November 30, 1998 at 12:37:51:
Dear Steve,
This stuff is WONDERFUL. I would like your permission to put it in our archives under this subject for others to see. If everyone could start with this understanding.............
Since "helping others move toward wellness is an aspect of our own" you must have just taken another big step in your wellness. Can we link with your 'site?
If you dispense this level of wisdom there, we really need that resource.
Namaste` Walt
Follow Ups:
I'm honored
Posted by Steve Shapiro on December 02, 1998 at 20:39:50:
In Reply to: Re: Multiple stages of understanding posted by Walt Stoll on December 01, 1998 at 11:48:19:
Walt (and Renee),
I post on several boards and answer anywhere from 1-50 emails per week. My neurons can't keep up with it all, and I frequently forget what I tell whom.
Therefore, I make it a policy to never recommend things, and to answer as honestly as I can at that time. I do remember an e-mail query about pycnogenol(sp) a few days ago, but did not link you (Renee) with that e-mail.
We are going to have to disagree on the supplement recommendation. I can not and will not recommend what is in reality a highly unknown substance. I'm truly happy that your son responded to it, and I hope that he continues to respond to it with no untoward cross-reaction.
Walt, I'm honored that you think something I typed is worthy of archival on your board, and I am more than happy to give my permission for this and anything else I fumble out to be permanently etched on your disk of choice.
I have not had any personal revelations lately, and I continue to migrate toward that goal of obtaining optimal health.
Most signs of autoimmunity are gone, I have only a few residual flares of illness in my mouth while eating. I do have some stress to my kidneys and liver, as indicated by continuing nocturnal urinary urgency and elevated cholesterol, LDL, HDL, CO2 and BUN. I've made some diet and herbal adjustments and will see how that works.
Sharon is also threatening to take me to a meditation seminar :-)
The only thing that's certain is change.
Best wishes,
Steve Shapiro
PS: most of my Pemphigus web page was written over a year ago. It is most informational, and I'll leave it to the reader to decide it's quality.