why I'm here

[Moeim2]

hello everyone,

I am here because my best friend's daughter suffers from a rare condition called ectodermaldysplasia.  Her name is Kendall and she is 18 yrs old.  these are her symptoms:  alopecia, low body weight, legally blind, legally deaf, skin cancer, tumors, and a smelly, yeasty crust all over her body.

I don't suffer from any skin conditions, nor do my kids.   That doesn't change the fact that I am very aware of the struggles experienced by those who do.  I've watched Kendall suffer for over 5 yrs and it's a very traumatic experience.

5 yrs ago, I was approached by a mutual friend who said her friend's daughter Kendall had a series of rare birth defects.  I met Kendall and her mother Marissa and since then we have become best friends.

When I met them, I was studying aromatherapy and the effects of essential oil products on health conditions.  I was asked to see if I could formulate a product to help Kendall get rid of the yeasty crust she was dealing with.  Yeast smells bad and she was miserable and embarrassed.   Traditional medicine could not get rid of it.  Marissa was told to use Crisco and a Brillo Pad to scrape the yeasty crust off Kendall when she was a baby. Of course I can't cure anything but figured I could at least try to formulate a cream to address the yeast stuff.  I did a lot of research and decided to use a base oil of Calendula which is from marigolds and has properties that soothe yeast and skin conditions.  I added essential oils like Tea Tree and Lavender among others, and made a cream which I gave to Kendall to try.

Two weeks later, I received a call from Marissa that the crusty yeast stuff fell off in the shower and revealed healthy skin..  As long as Kendall used the cream the yeast growth was controlled...not cured...just controlled. 

2 yrs go, Kendall got skin cancer and her specialists at UC Med Center prohibited her using the cream because they didn't want any other product to interfere with the traditional medications and chemo she needed.  the yeast came back.  Now, 2 yrs later, she is in remission and her doctors have allowed her to use the cream I make under their supervision.  It is working just as effectively as before.

I joined this forum so that I could inform myself about skin conditions so that I can explore other natural treatments that may possibly improve some skin conditions.  I figure if this cream can dissolve yeast that traditional prescriptions couldn't, then maybe it would work for ezcema, psoriasis and other external conditions as well!

I've had positive feedback from one sufferer of Ezcema on her face. Within three days of using the cream the ezcema was disappearing.

To explore this possibility further, I will send a free 2 oz. sample of this cream to anyone here who wants to try it.  If it works, then please send me a testimonial and if if doesn't, please let me know.

I'm not an opportunist nor a quack.  I just want to help people if I can.  Of course, if 100 people want a free sample, then it will cost me a lot, but since I make the product from scratch I can afford to give samples away...for now.  If it works for you, I will make it available for $20 for a 4 oz jar which is a lot cheaper than many co-pays for a prescription would be.  It is very gentle, and can be used anywhere on the body. 

If you want info on the ingredients and usage, email me at email address removed. See member profile. and I will answer any questions you have.  Another point to consider is that I make a line of skin care products that are very gentle and should not damage delicate skin.  Let's face it, if your skin is already compromised you probably should not use commercial products to cleanse and moisturize your face.  they contain a lot of questionable ingredients that may irritate your skin.  I do not use any synthetic products in my formulas. 

I know that members of this forum have probably been given false promises about products that claim to cure skin conditions.  I'm not doing that.  No cures here...just soothing.  I don't know what I can say or do to fix those bad experiences, but I truly want to expose this product to people who may benefit from it and know that I've accomplished something positive..  If I did suffer like you all do, I wouldn't hesitate to take advantage of a product that may or may not make a difference in the struggles that you deal with every day.


thank you for your time,
maureen

[Blue Bird]

 Greetings and welcome to SkinCell, Moeim2,

What a beautiful story about the healing power of natural herbs, essential oils,
and everything else that you put into the cream that healed the girl who was suffering.
I have never heard of her condition and it is amazing that one person could be suffering from so many different things all at once. My, my, mercy, me.
 
 You have done so much good for the girl, Kendall, whom you mentioned.It does seem that some of us could probably benefit in some way from what you have been able to
study and understand in a practical application.
 
 Bless your heart for all you do. Your email address was removed because it helps you to not get spammed from spambots, computers that search for email addresses.
 
 But, it is in your profile, for anyone who wants to take you up on your offer.
 
Thank you for this post, it was a breath of fresh air to see such good being done
for others with the use of traditional herbs and natural remedies.
 
 I may take you up on your offer. You come across as a naturally gifted healer.
 
With hopes for your good health, good fortune and happiness

[anthropositor]

I am troubled about whoever told Marissa to use Crisco and a Brillo pad.  Brillo pads are spun steel with strong grease cutting detergent impregnation.  On several counts, they are not appropriate to use on skin undergoing any serious challenges.  If it was a physician who gave this thoughtless advice, he needs to be called to task for it.

You say you are not an opportunist or a quack.  That is a hard thing to pin down.  You are interested in aromatherapy which seems to have some elements of quackery some of the time, but which may also have considerable merit.

I sometimes declare that I am an opportunist in spite of the pejorative elements the word contains.  A few days ago I had the opportunity to buy a lot of fresh cranberries for twenty five cents a bag (roughly 1/10 retail).  I like fresh raw cranberries.  I bought twenty pounds.  I am dehydrating what I cannot eat fresh.  It is not easy for me to eat more than about a half pound or so of cranberries a day.  So I will wind up with a few gallon jugs of dried cranberries, which will keep for months.  That is opportunism, taking advantage of an unusual price level. 

What I am NOT is a predatory opportunist.  In reading your very first post, the appearances that would ordinarily raise my hackles and set me to growling and lurching on the end of my chain. aren't getting that response.  I am only salivating a little and sniffing the air carefully.

I do approve of the careful use of common sense and reason particularly in the care of conditions which are not currently being successfully treated by mainstream medicine.  My only real association with aroma therapy is that I have an extremely acute sense of smell which I use all the time to enhance my well being.

I strongly disapprove of chemical air "fresheners" and don't much like artificial flavors and food colorants either.  But I am not unreceptive to using the real extracts of herbs, fruits and seeds in reasonable, rational ways to enhance health and wellbeing.  You could easily be doing that.

The ingredients you mentioned in your cream sound reasonable enough, even though there is little information on the proportions you have used.  A year or two ago I could have tested it for you on my skin, which had some intractable problems which went on for some years.  But in more recent times, I have been unable to find a single lesion anywhere on my skin to experiment on.  I am currently experimenting with one of my eyes and a few of my teeth.  With the eye, I have the opportunity to avoid or delay for a number of years, a cataract operation.  That is opportunism which I engage in with relish.

I could certainly test the use of your cream on my completely healthy skin, but why bother.  You need a few folks that have current problems that are not being well met by mainstream allopathic medicine.  Then, if your unguent has some merit, any improvements that occur will lend weight to your belief in it.

If you look at some of the threads I have started here on Skin Cell Forum, and the writings on my blog Eureka Ideas Unlimited
eurekaideasunlimited.blogspot.com
you may get some ideas which will help you determine the usefulness of your product prior to actually marketing it, even at cost.


 

[Moeim2]

Hi Matt,

I assume I'm talking to Matt and everyone else here   I am glad I didn't "raise your hackles" and that you've allowed me to join your forum.  As far as the use of aromatherapy, there are different types.  My interest lies in essential oils and natural vegetable bases, not synthetic fragrances...yuck.    Yeah, it's a buzz word, but most everyone understands what it means.

I'll probably never be able to make a pineapple-mango blend, because I won't use synthetic fragrances, but there are plenty of other options that are actually distilled from plants, flowers and other botanicals so that's a non-issue.  I will admit tho', that I make a yummy lip balm which contains artificial flavorings of Bubble Gum, Candy Cane, or Vanilla.  customers love that stuff... Of course, I can also make one with Peppermint or Spearmint Essential Oils that is natural and because I control what I make... I can do that too!  I enjoyed your distinction between "predatory" opportunist vs. opportunist because yeah...that describes me.  The non-predatory version of course!  If the cream is effective for some of your members, then I've accomplished something good, and because I make everything from raw materials I can control the cost and will make a little something for me too!  But taking advantage of people who are dealing with these skin conditions is not my motive. 

Here is what I see.  I see commercial enterprises offering a 1 oz jar of wrinkle cream for $100.00.  I see pharmaceutical companies charging outrageous fees to insurance companies for products people need on a regular basis just to function daily.  I see people on limited incomes...often because their conditions prevent them from working and can't get prescriptions for what they need.  If they are on Medicare or Medi-Cal they have limited access to the products they need, or can't get approved for them at all.

That's why natural remedies can often be beneficial.  I would presume that most people understand that prior to the 20th Century, there were no pharmaceutical conglomerates and people had to rely on natural sources for relief from most conditions.  So, why not consider those options today? Most people expect a pill to fix everything and sometimes it can't.  Or maybe it can but the side effects are really SCARY! I just love those commercials where a person who has allergies is running thru a field picking daisies and then at the end of the commercial... a voice says "this might cause a heart attack, or liver damage, or shortness of breath...contact your doctor if you exhibit any of these symptoms" etc.  Wow, that really makes me want some!

It is BS that Kendal's doctor suggested that ridiculous idea to them.  But her condition is extremely rare and back in the 1980's I suspect they didn't know what to do with her.  Kind of like using leeches to draw blood out of someone who is sick.... pure ignorance.  I'm just glad I live in a time where we have some options regarding our health and people aren't so gullible!  I'm not a doctor, and have no medical degree.  I just enjoy making blends that sometimes work.

I stand by my offer.  I will provide a free sample of this cream to anyone who wants to try it.  Email me at my profile.

Blessings,
Maureen Perez

[itchychick]

Hi Maureen,

Matt is one of our moderators here at SkinCell, while Anthro is a vigilant member.  There is no need to feel upset or embarrassed by Anthro's post.... you would know if he was really angry!  You must understand that our members and the moderating team are very cautious of people trying to sell "cures" on this site.  Many people suffer immensely and are desperately looking for relief.  As you have pointed out, this can leave the door open for unethical people to take advantage of them.

Quite a few of us are interested in non-pharmaceutical approaches to controlling our skin conditions, but some are controlling their illnesses with medication and may not have a choice in the matter. That is why this thread was moved to Natural Remedies - like-minded members will find suggestions here.

I look forward to hearing about the results of your "testing"!

[Moeim2]

Hi Itchychick,

Thanks for your post.  I'm wasn't embarrassed about anthro's post.  He brought up very valid points.  I know there are a lot of unethical people roaming these sites.  What I'm offering is not a cure tho'.  Can't use the "C" Word, ever.  My post was meant to communicate to all of you where my thoughts are on natural treatments and hopefully get an idea of who I am and how I think. 

Chronic skin conditions have medical causes and topical application of most products, in my opinion, don't make the condition go away permanently.  When you stop taking the treatment it will usually come back.  I'm sure there are exceptions to that, of course.  I know pills are required for many conditions, but sometimes a natural treatment can work along with traditional medicine, and sometimes not. 

I am very glad my post is on natural remedies because that's where it belongs.  I don't want to intrude on the communications between sufferers of these conditions and their posts of support to each other.  Since I don't deal personally with a condition such as these, I can't commiserate with any of you like you can with each other.

But if I think of something that might be worth trying, I might pop in now and then and suggest things they can do on their own to possibly get some relief.  But here, on this sub topic board, I will be a lot more visible.

Blessings,
maureen

[Blue Bird]

Moeim2> Do you have a store or something that you sell your wares through?
How else do you peddle your lip balms and home made ointments?
 
 My skin condition is pretty good, save for that one piece of aggravated
skin on the side of my chin. It's not as bad as it used to be, and I do see a time
when it will be gone. We all have to have hope.
 
 Could you mention what the basic ingredients that you use in your free samples,that you mentioned? From what I can gather it is:

I did a lot of research and decided to use a base oil of Calendula which is from marigolds and has properties that soothe yeast and skin conditions.  I added essential oils like Tea Tree and Lavender among others, and made a cream which I gave to Kendall to try.

  I am going to look for calendula, I have Tea Tree Oil, I have to buy some lavender oil, is there anything else I should be on the lookout for to include in my own experimentation, based on what you are suggesting?
  How does it turn into a cream, since you are using oils? Do you put it in zinc oxide,
or some other "creamy" type of ointment?

I am sorry, but on review, I don't think that I will be requesting a sample. it's not a good idea to give out your home address to complete strangers on the net.
 


 I hope you can truly help us understand what you used in order to help us help ourselves. Being that you don't  have any skin conditions, or maybe you have dry skin occasionally, or whatever, I am just wondering  if you really want to help us or to try to get us to buy stuff that may or may not work.

We don't usually sell stuff to each other on here, we share what we have that works, explain what we use, and offer sympathy to people who are suffering. Nothing is as important as giving good advice and compassion to each other on here, really.

 I am in complete agreement with Anthropositor. You can't pull one over on him, and we both are somewhat skeptical, but you come in peace and seem positive.
 
 So, what else do you use, if you really want to help us help ourselves, besides the ingredients that you already mentioned? We can try to do this ourselves.
 
 I also am horrified that the girl you mentioned helping would have anyone go at her skin with a brillo pad. Since she is severely affected with a lot of unbelievably unbearable conditions, I can only imagine the horror that poor girl was going through when someone tried to scrape that yeast off her skin with the brillo pad. 
 
 It's a good thing that your friend knew them somehow and recommended that you
help them out, you did a good thing and you know it.
 
 Well, I'll be on the lookout for Calendula. Thank you so much for mentioning it.
Here is what I found on a quick search:

      Calendula
The flower petals of the calendula plant ( Calendula officinalis ), or marigold, have been used for medicinal purposes since at least the 12th century. Calendula is native to Mediterranean countries but is now grown as an ornamental plant throughout the world. It is important to note, however, that not all household plants called marigold are members of the calendula family.

Calendula contains high amounts of flavonoids, plant-based antioxidants that protect the body against cell-damaging free radicals. Researchers are not sure what active ingredients in calendula are responsible for its healing properties, but it appears to have anti-inflammatory, antiviral, and antibacterial effects.

Traditionally, calendula has been used to treat stomach upset and ulcers, as well relieve menstrual cramps, but there is no scientific evidence that calendula is effective in these cases. Today, topical applications of calendula are more common, especially in Germany. Calendula has been shown to speed healing of wounds (possibly because it increase blood flow to the affected area), and the dried petals of the calendula plant are used in tinctures, ointments, and washes for the healing of burns, bruises, and cuts, as well as the minor infections they cause.



Plant Description
Calendula is an annual plant that thrives in almost any soil but can typically be found in Europe, Western Asia, and the United States. It belongs to the same family as daisies, chrysanthemums, and ragweed. Its branching stems grow to a height of 30 - 60 cm, and it blooms from early spring until frost. The orange-yellow petals of the flowerheads are used medicinally.



Parts Used
The dried petals of the calendula plant are used for medicinal purposes.



Medicinal Uses and Indications
Except in extremely dilute homeopathic preparations, calendula is not generally taken orally.

Burns, cuts, and bruises

Calendula tinctures, ointments, and washes are commonly used to speed the healing of burns, bruises, and cuts, as well as the minor infections they cause. Calendula cream is also used to treat hemorrhoids. Animal studies show that calendula does appear to speed wound healing, possibly by increasing blood flow to the wounded area and by helping the body produce collagen proteins, which are used to heal skin and connective tissue. Although no scientific studies in humans support these uses, applying calendula topically is considered safe.

Professional homeopaths often recommend ointments containing calendula to heal first-degree burns and sunburns.

Ear infection (otitis media)

Ear drops containing calendula are sometimes used to treat ear infections in children. A few scientific studies have shown no side effects, although the studies are not of sufficient quality to determine whether calendula is truly effective.



Available Forms
Fresh or dried calendula petals are available in tinctures, liquid extracts, infusions, ointments, and creams.

Calendula products should always be protected from light and moisture, and should not be used after 3 years of storage.



How to Take It
Pediatric

Use only topical and homeopathic preparations for children.

Calendula can be used externally in creams and ointments in dosages of 2 - 5 g calendula per 100 g cream or ointment.

For homeopathic dosages, consult a licensed homeopath.

Adult

Infusion: 1 tsp (5 - 10 g) dried florets in 8 oz (250 mL) water; steep 10 - 15 minutes; drink two to three cups per day
Fluid extract (1:1 in 40% alcohol): 0.5 - 1.0 mL three times per day
Tincture (1:5 in 90% alcohol): 5 - 10 drops (1 - 2 mL) three times per day
Ointment: 2 - 5% calendula; apply 3 - 4 times per day as needed


Precautions
The use of herbs is a time-honored approach to strengthening the body and treating disease. Herbs, however, can trigger side effects and can interact with other herbs, supplements, or medications. For these reasons, herbs should be taken with care, under the supervision of a health care provider.

Calendula is generally considered safe for topical application. It should not be applied to an open wound without a doctor's supervision. People who are sensitive to plants in the daisy or aster family, including chrysanthemums and ragweed, may also have an allergic reaction to calendula (usually a skin rash).

Calendula is also known to affect the menstrual cycle and should not be used during pregnancy and breastfeeding. Theoretically, calendula may affect conception when taken by a man or woman, so couples trying to get pregnant should not use calendula.



Possible Interactions
There are no known scientific reports of interactions between calendula and conventional or herbal medications. Theoretically, calendula may interact with sedative and antihypertensive (blood pressure) drugs, so talk to your doctor before combing these drugs with calendula.



Supporting Research
Basch E, Bent S, Foppa I, et al. Marigold (Calendula officinalis ):An evidence-based systematic review by the Natural Standard Research Collaboration. J Herb Pharmacother . 2006;6(3-4):135-59.

Blumenthal M, ed. The Complete German Commission E Monographs. Therapeutic Guide to Herbal Medicines . Boston: Integrative Medicine Communications; 1998: 100.

Brinker F. Herb Contraindications and Drug Interactions . 2nd ed. Sandy, Ore: Eclectic Medical; 1998:46.

Cummings S, Ullman D. Everybody's Guide to Homeopathic Medicines . 3rd ed. New York, NY: Penguin Putnam; 1997: 295.

Duran V, Matic M, Jovanovc M, et al. Results of the clinical examination of an ointment with marigold ( Calendula officinalis ) extract in the treatment of venous leg ulcers. Int J Tissue React. 2005;27(3):101-6.

Foster S, Tyler V. Tyler's Honest Herbal: A Sensible Guide to the Use of Herbs and Related Remedies . 3rd ed. New York: Pharmaceutical Products Press; 1999: 85-86.

Gruenwald J, Brendler T, Christof J. PDR for Herbal Medicines . Montvale, NJ: Medical Economics Company; 1998: 704-706.

Kalvatchev Z, Walder R, Garzaro D. Anti-HIV activity of extracts from Calendula officinalis flowers. Biomed Pharmacotherapy . 1997;51(4):176-180.

Sarrell EM, Cohen HA, Kahan E. Naturopathic treatment for ear pain in children. Pediatrics . 2003 May;111(5 Pt 1):e574-9.

Sarrell EM, Mandelberg A, Cohen HA. Efficacy of naturopathic extracts in the management of ear pain associated with acute otitis media. Arch Pediatr Adolesc Med . 2001;155(7):796-799.

Schulz V, Hansel R, Tyler V. Rational Phytotherapy : A Physician's Guide to Herbal Medicine. 3rd ed. Berlin: Springer; 1998: 259.

Ullman D. The Consumer's Guide to Homeopathy . New York, NY: Penguin Putnam; 1995:254-255;334.




 

[Moeim2]

Hi Blue Sky,

I understand your concern about giving out your personal address.  The Calendula Cream is not offered on the site, because I want to see if it's effective first for other skin conditions besides the yeast buildup that Kendall suffers from.  That is why I'm offering free samples to your members.  I will include the ingredients here, for your information and others, but don't be offended when I say that I am trying to create a business that will allow me to be home with my family rather than working a job that I'm unhappy with, while doing what I enjoy and helping others in the process.  That is why I made sure the prices for all of my products are affordable because I understand that many effective skin care products are priced out of reach for me as well as others.  I believe in my products and know they are effective because I use them on myself, family and friends with excellent results.

I make the cream base myself.  I don't use any commercial bases in any of my products. My client base is extremely small because it's very expensive to market and compete with the large companies, but I hope one day that will change.  I make everything in my home under sterile conditions and don't have a warehouse, manufacturing facility or staff.  I have a website called IsisDivining.com where I offer other skincare products but since I don't have thousands of dollars to spend on advertising, I'm not easily found.  I didn't post my website initially because my intentions were only to focus on getting feedback on the Kendall Komfort Kreme and not drive traffic to my site.  But since you've asked and since I'm willing to publish the ingredients here, per your request, I don't feel it's wrong to put it out there as well.

Here are the ingredients.  Calendula Oil I macerate myself, Beeswax, Emulsifying wax, Chamomile Infusion, Lavender Water, St. Johns Wort Oil, Co2 Blend(contains calendula, sea buckthorne berry and rosehip seed extracts), Lecithin, Plaintain Oil, Essential Oils of Lavender, Myrrh, and Tea Tea, Cosmetic Grade Borax for binding, and Potassium Sorbate which acts as a preservative.  It's used on dried fruit to prevent fungus so is edible and I have never encountered any product warning regarding it's use.  It is a natural alternative to Germaben based preservatives which contain formaldahyde (I know it's not spelled right)...similar to what morticians use to preserve dead bodies and which many commercial cosmetic companies prefer using in their products.  Big Yuck, there!

I hope I have addressed your questions adequately.

Blessings,
Maureen

[bunnie]

Hello Moeim2.

Chronic skin conditions have medical causes and topical application of most products, in my opinion, don't make the condition go away permanently.  When you stop taking the treatment it will usually come back.

The reason why that occurs is because NOTHING can remove an autoimmune response, (abnormal immune response) which most serious skin conditions are the result or manifestation of this response. People who suffer with autoimmune disease are born with the genetic predisposition to autoimmune diseases, (we can have more than one.) All that can be done is to suppress the immune system with immunomodulating drugs, which thereby suppress the production of the abnormal antibody (autoantibody) which is produced within this abnormal response. In idiopathic cases it occurs of and by self, caused by a malfunctioning of certain cells in the immune system. It can be triggered in some cases by allergies to certain enviromental factors, remove the allergy factor, and the response will not occur again, but the predisposition  is always there. Topical treatments help relieve the particular skin disease manifested, these include mainly steroids, the only cream I have known myself in the past 15 years to have any affect at all.
Ectodermal Dysplasia, is not a single disorder, but is in fact a group of conditions, of which almost 150 have been identified. Some of these include forms of hair loss, alopecia, dental abnormalities, malformed fingernails, eczema, sweat problems, heat intolerance, cleft palate, cleft lip,the eyes, to name but a few.
The Ectodermal Dysplasias are heritable conditions, (passed down through the parents in Chromosomes/DNA ) in which there are abnormalities of two or more ectodermal structures  such as the hair (tends to be very thin and sparse),teeth (absent, pointed or conical), nails, sweat glands (little or no sweating.)  Each combination of features represents another type of ED Syndrome and has a specific name.Please note this link.....
http://health.nytimes.com/health/guides/disease/ectodermal-dysplasia/overview.html
It is after reading quite a bit on these conditions, hardly surprising that this young lady has yeast formations and sometimes bad smelling discharges. No treatment is required for these abnormalities, but fungal infections can affect anyone, and as there is heat intolerance and the inability to produce sweat, then naturally these persons will be more vunerable I would think.
I personally do not believe in aromatherapy, nor these home made remedies. They are in my opinion  potentially dangerous, especially if anyone is allergic to allergens. They may have been used since the 12 century but we have moved on from then. As for aromatherapy, well I don't see it being any use whatsoever in an accident situation or severe trauma. I'd be screaming for the Pethidine myself!
There is no offence whatsoever intended in the following, but In particular you say...

I am here because my best friend's daughter suffers from a rare condition called ectodermaldysplasia.

Then (with all due respect) you go on to tell us about your home made cream, which after offerring a free sample you then say,

If it works for you, I will make it available for $20 for a 4 oz jar.

So the reason you are here is not for best friends daughter, (there is nothing unfortunately can be done for this lady so why would you mention her at all?)  but to advertise your cream in my opinion.

[Moeim2]

Hello Bunnie,

Thank you for your comments.  Everyone has a right to their own opinion about natural remedies.  Mine is that they can compliment traditional medicine in some cases, and sometimes they work well alone.  Regarding your comment that Kendall's crusty yeast on her extremities and head doesn't require treatment is not true.  She has the rarest form of ED and because excessive yeast buildup can compromise her autoimmune system she takes a daily dose of Fluconozole.  If she didn't she could die.  Secondly, your other comment that no one can help her is also not true.  You say that I'm not really here about her.  Just to sell cream.  If you read my initial post, you would see that it is because the cream helped her yeast condition and that is why I offered samples of it to members here.  This is a forum devoted to skin conditions and I thought that if anyone had a similar symptom to hers that maybe the cream would help.  Or perhaps it would help other skin conditions as well. 

Marissa, Kendall's mother asked me to suggest to you that rather than quote an article from the NY Times, perhaps you should actually go to the Ectodermaldysplasia Foundation website and get more accurate information before dismissing her daughter as unable to be helped.  After all, she and Kendall have been living with this disease for 18 yrs.  Also, don't be surprised if Marissa joins us on this forum on behalf of her daughter.  Since her daughter has had amputation of part of one hand and her thumb fused and another finger amputated down to the knuckle, due to the skin cancer tumors, she is unable to use a keyboard to speak for herself.

I see members on this sub section referring other members to links for Manuka Honey, Emu Oil and other remedies that have either helped them or someone they know.  Do you think that when they go to that site to order it, the product will be free?  Will they get free samples to see for themselves if it works for them?  I doubt it. So, why question my motives here when I'm offering free samples to members and heaven forbid... actually put a price on it, if it works?  I suspect that if Emu Oil or Manuka Honey or any other natural remedy does work for any of you, you will probably buy more!

Kendall is being treated by University of California Medical Center specialists who have encouraged her to use natural remedies together with their traditional treatments.  They have also acknowledged that the cream I made for her has worked well to compliment their own regimen set in place for her.  These are teaching doctors at a teaching hospital and are experts in the field of dermatology and cancer.  These aren't quacks in the Bahamas...or wherever.

Do you pay for your prescription drugs?  I presume you do.  We all do.  Depending on the type of insurance we have or don't have, those co-pays or drugs can cost a lot more than 20 bucks for some of us, right?  Medical studies done in Australia have found that Tea Tree Oil is as effective as benzoyl peroxide without the side effects of flaking, dry skin in the treatment of Acne.  Would you rather spend $$ on the drug or a 10.00 bottle of Tea Tree?  Which would you rather use? 

I understand concerns you all have about being taken advantage of.  I respect those concerns.  And a side comment regarding Blue Sky's concern about sic. "giving out her address to strangers on the internet"... don't you think they already have it?  How does junk mail appear in our mailboxes anyway?  Every time we order something over the phone or the internet or subscribe to a magazine, our address is necessary or we won't get our order...

And Bunnie, if you don't believe in effectiveness of natural remedies, why are you posting your comments here?  I was under the impression that this sub section is for those of us who do, and that is why your forum put my post here.  And this is where it belongs.  There are plenty of places on this forum where you can exchange information on the traditional treatments that you prefer to use, which is your personal choice. 

I was open and forthcoming about why I'm here when I asked to join this forum.  I didn't come sneaking in pretending to have a skin condition to take advantage of all of you.  I really do want to help whoever I can and myself, in the process, and negative posts come with the territory.  I guess that if Marissa would have joined this forum before I did and raved about the cream and sent you all a link to my website, that would have been ok?  But.. .the cream isn't on my website... since I planned on seeing if a FREE sample works for others first.  Go figure... 

Blessings,
maureen

[bunnie]

Hello Maureen,

Regarding your comment that Kendall's crusty yeast on her extremities and head doesn't require treatment is not true. 

  I never said that. I repeated the quote from the link which stated that there was no treatment required for the ED, and that according to those sites surgery etc is all that can be done to improve the situation.I got this info from....please note in bold.
http://www.nlm.nih.gov/medlineplus/ency/article/001469.htm

There is no specific treatment for this disorder. Wearing a wig and dentures can improve the child's appearance. Artificial tears may be needed to replace normal tearing and prevent drying of the eyes. It may be helpful to spray the nostrils with saline nose spray often to remove debris and prevent infection.

http://www.nfed.org/FAQ.htm

There is no cure for ED, but many treatments are available to address the symptoms.

I do need to apologise for omitting to make myself clear with regard the treatment. I meant the ED itself, and should have added that treatment is of course available for the symptoms which result from the condition. In my mind I thought I was stating the obvious, so of course it came across as being incorrect. I apologise I should have written that differently.
With regard fungal infections..Believe me I know plenty about fungal infections, I have been taking fluconozole almost every day for years!

to suggest to you that rather than quote an article from the NY Times,

I have never even seen a copy of the New York Times in my life, let alone read it! I am British and live in England.

They have also acknowledged that the cream I made for her has worked well to compliment their own regimen set in place for her.  These are teaching doctors at a teaching hospital and are experts in the field of dermatology and cancer.  These aren't quacks in the Bahamas...or wherever.

I will refrain from passing an opinion on that, because I have not seen any reports published by this lady's doctors, confirming that your cream has worked in this case. Unless they do, it then can be interperated that they are agreeing to the use of this, because it neither is doing good or bad, or as a placebo. I have never heard of "quacks in the Bahamas" it could be ducks for all I know.

Do you pay for your prescription drugs?  I presume you do.  We all do. (Here in the UK.if you are in receipt of benefits , or have life threatening condition, or a condition for life, all prescriptions are free)Depending on the type of insurance we have or don't have, those co-pays or drugs can cost a lot more than 20 bucks for some of us, right?

Here in the UK. All our medical treatment is free. Money, regarding treatment or surgery does not ever come into the equasion, therefore the specialists and doctors are not under pressure to make money in the same way as abroad.

why are you posting your comments here?

We can post where we like, however my concerns are those which I made in my previous post.

I was open and forthcoming about why I'm here

And indeed I respect that . Please note that I was very prominent, and written in  bold  saying....

There is no offence whatsoever intended in the following,

and also said..... (with all due respect)
Again , my intentions were sincerely not to offend you, I sincerely apologise if I have.
Bunnie

[anthropositor]

Maureen,
In spite of some speckles of spam, I'm tipping my hat to you.  You haven't been skulking around like some.  You have been pretty candid.  Also you didn't just disappear into the void, which is often what happens when someone gets into a joust with Bunny or myself.  Do you realize that she and I often have to fight each other just because there are so few willing to step up to the plate and debate the issues.

Fortunately, Bunny and I disagree so sharply on so many pivotal key issues, that we are not likely to ever run out of stuff to debate.  And we are both tough as elephant hide.  Exploring such issues with a bit of drama and zest, is to my mind, the central value of such a forum as this.  Even so, we really can't just continuously battle each other.  But I'm not going to jump you.  This isn't a tag team match.  It would be completely unfair.

I'm just going to sit at ringside and cheer for you, not because your position is entirely correct, but because after the knockdown you jumped up and made some jabs of your own.  I wouldn't want to scare off someone with huevos as big as melons.

If you should happen to score a knockout with the carnivorous Bunny (a longshot I fear), we can schedule the main event as soon as you heal up a bit.  Or if you do not have the patience to wait, just come on over to the edge of the ring and kick me in the teeth.  Then we can schedule the main event. 

...meanwhile, welcome to the Forum.  

[Moeim2]

Hi Bunnie,

Thank your for your response and clarification.  The link that appeared in your previous post when accessed, says New York Times Health Guide December 13, 2007, I believe.  Every time I double check that I lose this reply so sorry if I'm off.  I'm not very techy oriented.

Maybe the other link you posted in the previous post was omitted somehow.  You are correct.  There is no cure for ED.  Only treatment.  I don't expect to change your or anyone else's opinion about natural remedies.  All I ask is that you maintain an open mind to the possibilities.  No judging from me, but I don't like feeling judged either.   I know it is a controversial topic for many.  Of course I understand we can post anywhere here, I have chosen to confine my comments for the most part in this section so I don't intrude on others posts to each other.  But like I said in a previous post here, I will put in my 2 cents worth here and there and offer suggestions that members might want to try that doesn't involve buying my products.  Honestly, I'm not that shallow.

Living in the UK puts a different perspective on medical care options, definitely.  I didn't realize you are there.  My apologies for not picking up on that.  Here in the USA medical care is limited, very expensive, and if a natural remedy can help someone, and it saves them the outrageous cost of prescriptions, they will often try it.  My mother-in-law suffers from high blood pressure and needs daily medication to control it.  She is on Medicare which is the US's version of free care.  She had to go a week without meds and got very sick because she maxed out on her allotment of meds.  Very sad and very scary... unfortunately very common here, too.

I wish our health care system was more like yours, but doesn't seem to be happening.  Here, some people have to choose between medication and food... it's terrible.

No one wants to offend anyone...I certainly don't.  I choose my words carefully because I know I am being judged by people here that are not as outspoken as you are.  I am very blunt as well when I talk about something, so please don't take offense from my comments either. 

I enjoy exchanging information with you and anyone else that participates and I don't shy away from conflict, ever!   I respect someone who steps up and engages me in a topic, even if we don't agree.

Blessings,
Maureen

[bunnie]

It seems Maureen then that we are alike in that respect. I know what sufferring is maureen, I do not make comments concerning illness without having experienced the very worst of situations. I was on my death bed twice,and spent months in hospital afterwards,  have spent many many years in and out of hospital for long periods of time, and my condition also totally blinded me. I too prefer people to do what you have done, (without being offensive to anyone) and step up to answer, rather than to ignore the points being raised. That is one of the prime ways in which we learn. I  was a nurse, with many years experience in the medical field, and I find natural remedies do not sit too comfortably with medical science.
But Anthro! why on earth would you refer to me as being carniverous!! What a dreadful word to describe a fellow human being! However, I continue to hope that you really do have some respect for me, as I have for you (without predudice, and despite our differences?) I don't however make unkind (and untrue) references about you Anthro,or anyone else, and I respectfully ask you not to do so concerning me, it really isn't necessary.
bunnie

[Moeim2]

Hiya Bunnie,

I hope you're not offended by Anthros's post.  He sounds like he has a wicked sense of humor   But seems delightful and very protective of you all.  I'm sorry to hear about your experiences.  Life is not always fair.  I have been blessed with fairly good health, but there are so many aspects to life and something always seems to try our patience and our faith.  I am always kind of amazed to see that even people who seem to have lots of money, and material comforts can still live on the dark side of life.  It's very humbling to me and makes me grateful for what I have.  Puts life into perspective, doesn't it?

Blessings,
maureen

[anthropositor]

Hi Bunny,
Are you  vegetarian?  You could have fooled me!  I thought it was a compliment.  Had I wanted to insult you, maybe herbivore would have been more likely to pop up.  It was a metaphor my dear, as was my reference to us both being as thick-skinned as a pachyderm. 

One sense of the word carnivorous, is not meek, not ready to bolt into the forest at the first sign of trouble.  And ready to defend your meal from the hyenas.  These are all good things.  You have lot's of moxey!

Virtually everything I said in that post was complimentary, including carnivorous.  I was cautioning someone who you had squared off against, that if she wasn't very careful not to think of you as a little bunny nibbling some lettuce in farmer McGregors garden, she was in for a surprise.  The message was that you were a formidable opponent.  Where is the disrespect?

[Blue Bird]

 Moeim2> I know you are attempting to help people with your creams and natural remedies.
Many people come on here and also attempt to help people with their creams and remedies.
Since you are starting a home based business, I hope it takes off and does well.

However, your argument over my reticence to give out my home address might
seem to make sense, but the analogy fails at being logical.

And a side comment regarding Blue Sky's concern about sic. "giving out her address to strangers on the internet"... don't you think they already have it?  How does junk mail appear in our mailboxes anyway?  Every time we order something over the phone or the internet or subscribe to a magazine, our address is necessary or we won't get our order...

  Do I think strangers on the internet already have my home address: No I don't.
 
How does junk mail appear in our mailboxes: It gets sold by magazine subscription companies, credit card companies, and others.
 
 I personally never order anything over the internet. I do not order anything over the phone, either. I am not alone in this. I do know many people who have had their identity stolen through simple internet ordering activities. That is not to say you would do that, but it is a precaution that some of us take. Sorry.
 
 Thank you for listing those ingredients in your cream, though. That was kind and thoughtful of you. I appreciate that. I don't have any yeast problems, but I am going to continue to purchase those materials and see if any of them work for the small issue
that I have been battling, successfully, I might add. Successful, because I have tried
to use things that might help, and some of them have. I will try this and see if it helps finish the problem I have had.
 
 I hope you do well, I believe you could advertise on the net and get a lot of responses.
It is never easy for an entrepreneur to market anything remotely pharmaceutical, due to stringent rules imposed by the FDA.
 
 Best wishes to you on your business endeavours

[anthropositor]

Hi BlueSky,
I rarely buy anything over the internet either, and don't use my credit cards for the purpose.  But when I do fill out an internet form I usually make some minor spelling error in the address.  These errors often make it to my mailbox in the next couple of weeks, often from several companies with whom I have had no contact.  I can only conclude that an internet contact sold the address to others.  These strategic misspellings show up ten times more in the Email.  It is the reason I don't do any banking on the net.  But even so, there is no guarantee that someone won't hack directly into the bank computer even though I have not made any transactions on the net, and glean personal and perhaps sensitive information.  I don't know if there is a perfect solution.  I know a few people who have told me of identity theft problems.  It pays to be vigilant.

[bunnie]

Dear Anthro,
Explaining that remark the way you have Anthro, then I forgive you. I see you in the same light, that is why I have respect for you, but I don't use words which may have another meaning, rightly or wrongly I am very direct. I think we British tend to be a bit more circumspect and proper, stuffy if you like! I still maintain that under the wolf's skin there is a cuddly lamb, am I right, or would you never admit it?
(I mean that very kindly!) Anway Anthro, as ever .....
Bunnie
PS.

You have lot's of moxey!

What does that mean? I'm intrigued!

Maureen,
 

He sounds like he has a wicked sense of humor   But seems delightful

He has, and he is!
Please don't worry Maureen Anthro and I often clash, maybe its because we both feel passionately about things, I don't know. I would certainly miss him if he weren't here, and one thing is certain, we never allow our differences to cause a rift between us, we almost always thrash it out, and that in my opinion is also a learning process.
Bunnie

[itchychick]

   It's so nice when everybody is friends!

If I can step in for anthro, bunnie... moxey (or is it moxie?) is "spunk" or "backbone".

[Uncle Matt]

  It's so nice when everybody is friends!

Indeed it is   all round

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

I'm guessing Anthro's phrase equates to "You're a brave person..."

Uncle Christmas

[Bamawing]

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

I'm guessing Anthro's phrase equates to "You're a brave person..."

Hm.

"Spunk" means energy, zest. I've had people describe me that way, which I imagine would be quite scandolous across the pond! "Backbone" means you don't let people take advantage of you. I guess there's some courage implied, but mostly he's saying she's NOT passive. Hope that clears things up a bit.

And as to the great Antho-Bunny Smackdown, I unabashedly munch on popcorn whenever it gets going. They're both extremely smart and articulate, and yet they still respect each other. I wish more debates were this... real.

[anthropositor]

Other opinions to the contrary, words often have several distinct meanings.  That is not even getting into nuances and the use of metaphor.  I use a lot of metaphor.  This can cause confusion, or expose confusion.  But it almost always can also result in greater enlightenment.  I am not a linguist.  I don't speak a single language to my satisfaction.  Although I may know only a few hundred words of a dozen other languages, I am usually able to identify the specific language being used even if I don't know clearly what is being said.

I have long believed that it is good to use language with precision.  But that can be quite a trap.  Who would LIKE to be stuck in lawyer-speak or doctor-speak or professor speak all the time?  Would you pick up and read a novel which was written like a legal contract?  Of course not.

I grew up under the tutelage of a Presbyterian minister who did not have a set of core values.  I was confounded by the contrast between his creed and his life.  One wonders how one can get through all the religious indoctrination of a seminary and only have a set of ceremonial skills, with only emptiness and a certain dramatic flair behind it.  My father was a fine public speaker who really had nothing real to say.  It was all ceremony.

But along with some baggage I have had to discard, he gave me the legacy of music and a certain facility with words.  And he gave me the idea without realizing it, that words without core values are worse than nothing.  The tragic example of his emptiness was a profound revelation to me.  He was not a man to be hated and reviled, but to be understood, pitied, and forgiven his trespasses.

Going back a thousand generations, I honor all my ancestral forebears, saints and scoundrels alike.  And I honor them most for having the moxey (actually the word is probably moxie) to survive at least long enough to breed.

I have a chess student who is becoming quite a masterful chess player.  I have been training him for about five years.  Four if you subtract the times I booted him out of the lineup.  (But that too is an attempt to enlighten him).  He, like my father, has no core.  Of course he is only twenty-three now so he still has some time to mature and grow something real at his center.  I don't see clear signs that it is happenning.  But we don't really learn things in life smoothly in uniform increments.  We lurch forward sometimes with an inspiration or an epiphany. And often we fall back and become forgetful of our lessons.  Those who forget must ultimately repeat the learning.

When I had the stroke I forgot a lot of what I knew about chess.  It was my big clue that there was real damage.  I struggled mightily even while continuing to teach.  You could say that for a while, I taught without a core.  The student I mentioned?  He could sense I was wounded.  But he did not know what he was sensing.  He didn't know I was damaged.  He thought he suddenly got stronger.  He still does not understand how much chess occurs off the board; chess matches are often won or lost before or after the game is over.  But that is another story.  My greatest victories have been on the brink of defeat.  Adversity is the mother of invention.

[itchychick]

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

I'm guessing Anthro's phrase equates to "You're a brave person..."

Uncle Christmas

Ooops... mmm, I think I can guess what the former means.... I'm assuming it's PRON related?....

But yes, brave, gutsy and spirited.

[Moeim2]

Hello Everyone,

I am enjoying the verbal exchanges here very much.  You all seem to be good at speaking your mind, and that's refreshing!  I do understand the worry about giving out addresses, but for me, I could never avoid phone orders or internet orders...because there is a lot of great stuff out there, and local stores just don't have the things I want.  I would never sell names of my customers to anyone and I'm definitely not a serial killer, so your secrets are safe with me

So, if any of you ever do want a sample, the offer stands.  Otherwise, I am enjoying my visits here and appreciate being allowed to be here.

Blessings,
maureen

[totalfolly]

I am enjoying the verbal exchanges here very much.

I'm glad.    It does sometimes get lively around here, but that's not necessarily a bad thing.

So, if any of you ever do want a sample, the offer stands.

Any members who are interested in Maureen's sample, please contact her via PM.  Maureen, SkinCell will permit one post on this board promoting or offering your product--further postings are considered spam.  If you plan to hang around and get to know us and become an active member, we will probably have no difficulty allowing additional posts, but I think it'll be a bit till then.  Altho I have to say, you're off to an excellent start! 

totalfolly

[Moeim2]

understood. 

Blessings,
maureen

[Blue Bird]

 I hope that anyone who wants to, will profile Moeim2 and send her an email
to get a free sample.

I grew up under the tutelage of a Presbyterian minister who did not have a set of core values.  I was confounded by the contrast between his creed and his life.  One wonders how one can get through all the religious indoctrination of a seminary and only have a set of ceremonial skills, with only emptiness and a certain dramatic flair behind it.  My father was a fine public speaker who really had nothing real to say.  It was all ceremony.

But along with some baggage I have had to discard, he gave me the legacy of music and a certain facility with words.  And he gave me the idea without realizing it, that words without core values are worse than nothing.  The tragic example of his emptiness was a profound revelation to me.  He was not a man to be hated and reviled, but to be understood, pitied, and forgiven his trespasses.


I have a chess student who is becoming quite a masterful chess player.  I have been training him for about five years.  Four if you subtract the times I booted him out of the lineup.  (But that too is an attempt to enlighten him).  He, like my father, has no core.  Of course he is only twenty-three now so he still has some time to mature and grow something real at his center.  

 Anthropositor> Was your father was a Presbyterian Minister?

Your post was a very interesting introspective and it begs me to ask that question.

Also, if your chess student has no core, what does that mean, exactly?
How or why does that affect your tutelage of him, in chess?
 
I am honestly interested, if you want to, you can answer in mail, or here. 

Matt>Uncle Christmas> Is there anyway you could let us know just what all that does mean over in the UK?

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

I'm guessing Anthro's phrase equates to "You're a brave person..."

Uncle Christmas

 I love it when our English language gives us so many different options and so many different meanings of the same word.
 
 So many times when some one uses a word or a phrase, those of us across the sea from each other want to know what that means "over there". It's so much fun.
 
 Now, Matt, what are the embarassing meanings of any of those  words.
Which words have embarrassing meanings? Is it "Moxie", "backbone", or "a spunk"?

 Let me guess: There is some sexual meaning, over there, to the word "backbone".
Right or wrong?
 
 Wow, you guys, this was fun reading all of you. 

[anthropositor]

My father was a Presbyterian minister.  I never saw him pray other than in a ceremonial function.

I have higher expectations of my students than just improving skills in a game.  Chess is a martial arts kind of discipline.  A sport.  A Zen experience.  I incorporate many other subjects into the lessons.  I talk fairly frequently while playing, just as I keyboard a lot when I teach on the net. 

Excellence is not so much a matter of accumulating technical tricks and learning the various variations of the most effective chess openings.  It is equally important to have standards of behavior.  Character, finesse, discipline, effort.  But it is ethics, integrity, honor, empathy, grace; that are the foundations of the great chess combatant.  All of the elements of tactics and strategy can make you a strong player, even a champion.  But without these things, the victory is hollow.  The core is missing. 

My currently strongest chess protege will be going a few thousand miles away to teach a chess class of a couple of dozen youngsters.  It is a matter of terrible concern.  He has nothing else to bring to the table.  He will teach chess as a conflict, a brutal sport.  He will convey none of the music and the poetic beauty of it.  He can't.  He doesn't know how.  I don't even think he knows it's there.  His eyes seem to get vacant when I talk of these things.  To him, chess is only a complex of geometries.  Techniques and maneuvers to be mastered and prioritized. Things to be remembered.  Problems to be resolved.

In my mind, the why is more important than the how. 

[Uncle Matt]

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

For those that are confused, check out http://www.peevish.co.uk/slang/search.htm, although don't blame me for the consequences.

[itchychick]

.."spunk" or "backbone"...

Er, Itchy, over here, these two words have completely different meanings !!!   

For those that are confused, check out http://www.peevish.co.uk/slang/search.htm, although don't blame me for the consequences.

Oh dear.  I thought it might be as much....

[Blue Bird]

  Okay, there MattC> I looked in the slang dictionary online that you posted.
 You gave no clues as to which word made you blush, so I took them all on.
Results: Backbone- nothing
            Moxie- nothing
            Spine- nothing
            Spunk- Semen
 
 Okay, I see now. That made you blush? Holy cow balls. 

[Moeim2]

thank you for your comment, Santa's Little Blue Helper.

Blessings,
maureen

[anthropositor]

Well now that I am newly enlightened, I am certainly glad I never said, "You have spunk written all over your face."  I am glad to note that I have not previously used the word spunk.  Now it is unlikely that I will use it in the future.

[itchychick]

Well now that I am newly enlightened, I am certainly glad I never said, "You have spunk written all over your face."

Anthro!   

[Uncle Matt]

That made you blush? Holy cow balls. 

Unfortunately, I blush very easily. Luckily, most of the time, it doesn't show on t'internet.

Well now that I am newly enlightened, I am certainly glad I never said, "You have spunk written all over your face." 

However, it should be noted that Brits are aware that spunk does have alternate (and less, shall we say, embarrassing) meanings in the US, and therefore "spunk" (and it's derivatives) has started to be used over here in other contexts.

Uncle Christmas

[totalfolly]

Well now that I am newly enlightened, I am certainly glad I never said, "You have spunk written all over your face."

I just about rolled out of my chair when I read that! 

totalfolly

[Bamawing]

Oh!!! All over the face? That's something that gets lost in translation!

That little slang dictionary has come in handy a good bit when it comes to
"Britspeak." Now if I can just remember the British word for German Shepard... it's driving me crazy. My friend Kessler has one named Roman, and I watched him play ping-pong last night and nearly laughed myself out of my chair! he runs arouond the table, barking like mad, and trying to snap the ball out of the air. the only thing that's funnier than that is watching a full-grown, college-educated nuclear engineer pounce on a ping pong ball like a kitten, in a desperate attempt to keep the dog fro getting it. Priceless.

Anthro, your chess mention reminded me of a webcomic I saw quite a while back. I've linked to the page in question. Be forwarned that while the page I've linked to has nothing questionable on it, the comic is, on the whole, rated R. (But it's one of those that kids won't be sneaking onto anyway because they won't understand it.)

http://www.faubcomic.com/d/20050610.html

[Moeim2]

Hello moderators,

How come I type a message in chat and it doesn't show up?  One line did, the rest didn't?  Is there a problem?

thx
maureen

You can delete this question once you answer it.  Just don't know where else to ask it?

[bunnie]

You could just send a mod a pm moeim?

[totalfolly]

You could just send a mod a pm moeim?

We also have a board specifically for questions about forum/chat room problems.  Post your question to the Oi Admin board http://www.skincell.org/community/index.php/board,7.0.html and someone who knows the answer will be along to help.

totalfolly

[Moeim2]

Hello Everyone,

Go to my profile and read it.  I understand that per your rules, I can't talk via posts about what I do and I'm complying, but new members aren't going to see the directions to go to my profile.   I don't know if what I do can help anyone here...or Paul for that matter.  But, go to my profile and read my introduction post.  And Total Folly and other moderators, if I suffered from some of these horrific skin conditions...which I concede, I don't...but if I did, I would want to try anything that might help. I would also expect that my support group would allow me to consider other options and make my own decisions about trying something or not.  I understand that you want to protect your members from "snake oil salesmen", but sometimes, you may be "throwing the baby out with the bathwater".   I don't make claims about what it will do, but what it "might" do.  Meanwhile, no money is being exchanged here, so what is the problem?  I can't stand seeing all these posts from members that are going thru hell, and not be allowed to offer something to try.  This is so frustrating...

Also, the ectodermaldysplasia forum has asked me to write an article for their newsletter and I have received inquiries about samples, which tells me that their members are open to considering non-traditional treatments. 

And Bunnie,

I know you base your input on verified medical science but nature existed before doctors so please keep an open mind about alternative options?  And I hope you remain on this forum as a participating member because you have a lot of knowledge to share with all of us.  We may not always agree with each other's opinions, but that's what stimulates us to share our views!  Life would be such a bore, if everyone thought the same

blessings,
maureen

P.S.  Please don't kick me off for this post.  I sincerely enjoy the posts from everyone.

[bunnie]

And Bunnie,
I know you base your input on verified medical science but nature existed before doctors so please keep an open mind about alternative options? 

Hi Moeim,  With all due respect I don't know why you see the need to address me personally. You do not need me to endorse what you hold to be true.
Indeed I agree entirely with the statement that although we disagree that maybe through the interchange of views we may reach a better understanding. That goes without saying really. Unfortunately nobody as yet, has ever been able to explain the theory behind the practice, not to my own personal (I stress) satisfaction. It may well be acceptable to others, I am not disputing that.
If you read my statement in the Rant &Rave it states some of the reasons why I cannot advocate alternative medicine. I have explained the seriousness of advocating the sole use of alternatives many times, and also explained how it cannot alter this genetic fault. Would you explain to me how it can, because I would truly like to know and understand your point of view?

but nature existed before doctors so please keep an open mind about alternative options?

My education and experience in the medical field would not allow me personally, to ever have an open mind concerning alternative medicine to treat autoimmune diseases, or hereditary ones.
I am not disputing the fact, (nor ever have)  that this alternative approach may help some cases topically, to soothe and ease. I myself use coconut oil as such. I do not accept that alternatives can help the disease itself, either topically or systemically, and there is very little to no medical scientific proof that it can.
I don't remember whose post I saw that said something to the effect that alternative medicine has been practised for over 300 years. Well in fact as we all know it is far longer than that. Technology however and medical science has moved on a-pace since those times, and bear in mind, that the expectancy of life longevity was 30 years. If one was 50 years old one was considered really old! People are living twice as long now due to a healthy and sufficient diet and medical intervention when necessary.
It is also true that many medicines are made from or derived from plants etc.
What is totally different, is our understanding in  anatomy, physiology and histology, of the body, and indeed there is much to learn still, especially concerning genetics and the chemical signalling cells of the immune system.
I was talking with three consultants today on this subject, and a cure, or let us say more correctly a permenant remission, boils down to the genes responsible being isolated, and disabled in some way. This is where the research is at now. The only thing to alter that genetic process is through a drug capable of doing that. The drugs used now in these abnormal responses are in fact "killing the messenger" cell, or suppressing it, making it unable to secrete, which by doing so it normally stimulates the production of antibodies. It cannot relay the "message" if the drug has immobilised it.
My own personal real concerns are for people opting from taking medical advice to only that of alternatives.
respectfully bunnie.
ps I trust there is nothing in this post which can be interperated as being dismissive in any way, that is not, or ever my intent. 

[Moeim2]

Hi Bunnie,

I think you are right.  I do need to explain my point of view better regarding alternative medicine.  Most definitely, I do not suggest using essential oil blends or other alternative treatments in place of traditional pharmaceuticals...especially if you suffer from a chronic condition and you need it for survival.   I also will not say that alternative therapies are a cure for anything.  But I do believe they can compliment traditional medicine.  Even Kendall, who has ED and uses the cream, combines it with her prescription yeast medicine and has found that the results are better when they are used together, then when only the prescription is used.  But she is only one person.  That is why I want other people to try it and see if it helps them in any way as well.  Of course it is a topical preparation and cannot change how someone's immune system is wired.

However, if someone is using a prescription and it isn't helping at all, they will stop using it and try another pharmaceutical.  They will keep trying other pharmaceuticals until one does work.  If none work, then I say try something non-traditional, and if that product doesn't work, then try another...and so on.  And of course, maybe nothing in the universe can help their condition and they are stuck, suffering forever.  I am optimistic and prefer to believe that even if a condition is irreversible, perhaps there will be a product that at least offers limited relief which is better than no relief.  That is why my focus is on skin conditions, and not chronic diseases.  Even doctors prescribe topical products for skin conditions and they often work very well.  That doesn't mean that something natural couldn't help in some way, though.  I'm not a doctor.  But let's use chemo as an example.  If someone has cancer and is going thru chemo, they may get nauseous, so maybe inhalation of peppermint essential oil or ginger essential oil or either of these in tea form, may provide relief from that symptom, but obviously can't take away the cancer or the need for chemo.  These two herbs, as well as Chamomile have been used for nausea, colic and menstrual cramps for a lot longer than hospitals have existed.  When I have muscle pain, I could take aspirin or motrin which can cause stomach bleeding if taken on an empty stomach or if I choose to drink a couple glasses of wine, or I can take my muscle balm product...get relief, spare my stomach lining and enjoy my wine!  I guess I'm just selfish that way...

I have chronic insomnia.  I could take a sleeping pill provided by my doctor or I could try something herbal.  I use two products to deal with this.  One is Alluna, which contains Valerian and Hops extract and Sleep MD which contains Valerian and many other herbs that have sedative properties.  Both are effective for mind chatter and anxiety and work very well for me.  Since they're effective, why would I take a pill that could kill me if I misused it, or if I had a bad heart and didn't even know it? 

Another concern is that traditional pharmaceuticals often have potential side effects.  If a natural remedy works, I prefer it to a prescription that could stop my breathing or give me heart damage.  But I use prescriptions when they're necessary and the only option.

Blessings,
maureen

[totalfolly]

Well stated, Bunnie.

totalfolly

[bunnie]

Hi Moeim,

If someone has cancer and is going thru chemo, they may get nauseous, so maybe inhalation of peppermint essential oil or ginger essential oil or either of these in tea form, may provide relief from that symptom,

People don't neccessarily have to have cancer  for to receive chemo Moeim. Many of these autoimmune diseases are just like cancer, except the cells are not cancerous . That is why such treatments are offerred for severe cases of autoimmune disease to suppress as in cancer.
I have had two lots of chemo Moeim, and I can assure you that the very thought of either of those preperations would really make somebody vomit. Is this something you have read or experienced? Anything remotely food orientated, is enough to make you vomit, you can't even stand the sight of it. The nausea is something i hope you never have to feel, it is distinct and so severe you just want to die.We all had an anti emitic injected into the venflow, usually Stemitil, quite powerful stuff. 
Strangely at 11am the nurses would bring round a glass of medium sherry, for morale you know! I usually managed that! and I lived off midget gems! little boiled gum sweets! Don't ask me why, but it was a standing joke on the ward!

Another concern is that traditional pharmaceuticals often have potential side effects.  If a natural remedy works, I prefer it to a prescription that could stop my breathing or give me heart damage.

This is a typical point moeim and why we can never agree. I fully understand all about the natural benefits of things, and who wouldn't prefer to take something that may not have side affects, no matter what?
The point I am trying to make is that autoimmune diseases are chronic illnesses, that means lasting a long time or for life, and the trouble is to get these conditions under control, especially the idiopathic ones, is often very very difficult, and the symptoms are often very severe indeed. Life threatening in fact in some cases , and in various degrees of life changing.
Using an inhilation of peppermint for eg, to ease a queesy tummy is one thing, but easing the side affects of drugs which are in the process of killing half your immune system, is quite another. Do you see my point?  You cannot lift your head off the pillow, you feel as if you are the colour green, and you feel too as if you are "outside yourself." It is a nausea all of its own. These wards are piteous places, all ages, and yet there is a jollity about them, because everybody is in the same boat. Some come ashore others sadly don't.
Another situation regarding pain. There are more nerve fibers  (about 1.2million in fact)in your eye than anywhere else in your body. When my eyes were blistering and of course blisters burst, this exposed these nerves of the eye. Can you possibly imagine the pain! Listed in most medical books as unrelenting severe pain, it just doesn't go away until the tissue grows back over. I was given immediately on arrival at the hospital the largest dose of Pethidine 100mls every four hours. This resulted in being basically asleep for most of the day. Not to mention my eyes perforating 5 times altogether, flat eye and all the fluid from inside the eye running down my face. Exactly like a balloon full of water bursting. Where in all of this can alternative medicine possibly make a difference?
Most importantly Moeim many of us simply do not have a choice. We are between a rock and a hard place, the drugs can kill you, maybe causing no ill effect in the early years, and even though they have been stopped for many years, problems can occur in later life directly from those drugs. The thing is quality of life is at the time often preferable to longevity.
I am not saying Moeim that alternatives may not ease minor situations, but that is not what I am referring to in my posts. I am referring to those who have severe disease.
A person may think they have a really bad problem, until they see just how really bad it could be, whether it is autoimmune or not.
Bunnie

[Moeim2]

Hi Bunnie,

Traditional medicine is live-saving, but sometimes  the human and spiritual component gets ignored.  If someone believes that dietary changes or supplements are helping them deal with a serious illness then I say go for it.  As long as they are taking advantage of traditional treatments as well, who cares if they are proactive in what they eat or ingest if it makes them feel better?  I would never suggest to ignore traditional treatments for life-threatening illness and use natural remedies instead.  That's just stupid.

When you are suffering from a life-threatening or chronic illness, you need to follow traditional methods of treatment.  But in addition to that, people have a right to use whatever they believe gives them an edge in fighting their illness as long as it's not harmful.  If a member here believes that by changing what they eat or taking a supplement  helps them...where's the harm?  Follow traditional medicine but do whatever you feel helps you get thru it, even if it is "alternative"!

Am I disputing that traditional medical treatment is necessary and saves lives?  No.  Do pharmaceuticals carry potential side effects...yes.  But, if you need them to survive then you have to take your chances.  Do what you have to to feel better.  Don't ignore traditional therapies if they are proven to be effective for your illness.  Use them!  But there are alternatives to pharmaceuticals to address non-life-threatening conditions, sometimes.  It's all about choice. 

Your situation is terrible and you have been thru alot.  You chose traditional therapy and I presume it worked for you.  That's fine and good, because every one of us should be able to decide what benefits us.  But don't dismiss non-traditional approaches just because they aren't in the Merck Manual. 

Doctors and medical science aren't God manifest.  They are caretakers of humanity and are fallible, just like anyone else.  Also, I know chemo isn't only applied to cancer.  If it's necessary to fight an illness, then by all means, take it.  I would!

blessings,
maureen

[bunnie]

Moeim , this is what all this latest fracas has been about, and I have explained in rant and rave my stance on this subject.  I understood from your post that we were having a conversation about how in the physiology sense, alternative medicine can help with chronic disease. Chronic does not mean severe, that word is acute, chronic being long lasting.
I will say yet again, if natural products ease the symptoms of disease, I am of course not disputing that. They may moisturise well for eg; but as far as I am personally concerned, unless there is scientific proof that a natural product is actually improving a situation internally or externally, then I cannot accept it. To give you a perfect example of that...
My derm, a man who has written text books for derms, and renowned Nationwide in Britain; thought that Tocopheryl acetate (Pure VitE) because of its properties when given in high doses, may improve Dapsone induced headache. This is a common and quite severe side effect of this drug, and one from which I sufferred badly, even though the drug has always improved my situation overall. I have taken it for over 15 years ranging from 400mg to 50mg, along with all the other nasties, I have never been off it. We dare not chance it. So anyway, with me as the guinea-pig he did a researched fact-based dissertation on this, and it was presented to The British Association of Derms. and published. 800 mg of Tocopheryl Acetate given to relieve a common severe symptom, known in medical fields as "Dapsone induced headache" actually works! In fact, both from the patients point of view and also scientifically. However, to be accepted as a Scientific medical fact , this same procedure would have to be carried out over a significant number of years in a significant number of people with exactly the same disease, symptom and drug. It will not however stop, control, or prevent disease, whether autoimmune or not.
Only one food in the past 50years tested and proved beyond doubt to stimulate an already present, (and always will be) autoimmune disorder, is an allergy to Gluten. (that from a researchers mouth)
Think of the very vast food chain throughout the world and only one, in all of 50 years of research has proven beyond doubt to be put into that category. This is because in order for something to be proven scientifically to be a "culprit,"  the same symptoms  must occur in a significant number of people, more than 50% of cases, all having the exact same condition, over a significant number of years. 
So you see Moeim I am not disputing the actual use of natural products, but the point that you are not addressing Moeim, is the one which to me, from my experience both from myself and others, is the real danger behind all of this.
1) Some natural supplements actually interfere with these immunosuppressant drugs.
Bloods are taken regulary, this being the main diagnostic tool for the condition of our health.In order for these drugs to work efficiently, the doses are adjusted to the blood specs. If there was anything amiss regarding levels of essential nutrients in the blood , then this would be addressed and adjusted accordingly. The production of abnormal antibody, within the autoimmune response, needs to be suppressed, whilst maintaining a viable immune system.
2) Some people who are reading (not just members of this forum) may be in a very serious desperate situation, seeking answers they cannot find, and not even their specialists in fact. I learned this last week from my derm. This is because in Britain, where Derms are continually meeting and discussing their findings, are not hesitant in sending their patient to other colleagues around the country (at the hospitals expense) in case they may have any ideas or their own experience which may help their patient. The data is published and free to all derms in this country; Unlike other countries whose health systems are run as individual financial businesses. (not sure If I have put that correctly) The doctors are reluctant to share their patients and their data freely amongst themselves, it is their kudos and their finacial gain. That is not an agenda here at all. Therefore the result is , that sometimes, especially with rare cases, a patient here can often have information unavailable to a specialist abroad. Does that make sense? This was the conversation I had with my derm , two colleagues One specialist OPH. and the 4th a visiting derm from Florida USA. this last week.
These desperate few need good sound proven advice. They may have read about the side affects of drugs, then read of someone claiming their disease has been controlled totally by alternative measures, and due to the lack of knowledge and understanding of what exactly is taking place in their body and why, they may choose a very dangerous path. This can have a placebo effect on such people, they need so desperately to believe that what they are doing, is within their control, that they actually convince themselves that their measures are working. This is a very real psychological phenonoma.
Meanwhile the disease , because it really in fact is not being controlled, has moved on, without intervention, and by the time the symptoms have actually become a real problem, there is already a far more serious problem to deal with. So now due to lack of proper factual scientifically proven information, we now have a person  not only with a difficult to treat autoimmune disease, but a more desperate than ever person with a life changing or threatening autoimmune disease.

Doctors aren't God manifest.  They are caretakers of humanity and are fallible, just like anyone else.

You can ask anyone on here if I have not vehemently said that myself over and over again.

You chose traditional therapy and I presume it worked for you. 

None of it! and secondly I had no choice. We all were fighting to save my sight, and at one point my life, when it went in my pharynx closing off the trachea....Autoimmune diseases as I have said before, are often more severe in one person than another with the same disease. Take a child with my disease for instance. There is no difference in the childhood form, but because they are children, it is more severe for them.
I fully understand the difficulties for those in other countries who cannot afford insurance for treatment, but instead of grasping the only straw that appears to be available to them, maybe efforts should be made to offer advice as to what other measures these people can take in order to get medical treatment.
A thread on this topic of ways and means to obtain health care, by members living in countries where health care is paid for by the patient, is possibly a good idea?  and would I think, be a real good source for that kind of information. It would need a good attractive, straight to the point heading so that people who are unaware of what to do or where to go, would see it on the net, and maybe it could be stickied on here! Just a thought....
Ok, people without insurance may have to wait some time, I think all countries suffer from that, but at least they will be seen at one point, and if the situation gets worse they just have  to keep going back and back. I know how awful that is, I lost my right eye because of it.
With regard to prayer moeim, you are preaching to the converted. That is a personal individual faith, and does not (in my opinion)  come into this equasion. Seeing as you have brought it up, you may think I would not see the statement you made on Anthro's personal blog on his website, that you thought I would freak out if I knew that you were pagan; Just for your interest, well I wouldn't at all!   (what does it matter what I think about that, to you? why would I care? )That is your personal faith, and none of my business quite frankly. It was my faith that helped me through (and still does) the difficulties I have faced, and still do.
As you rightly say Moeim, and again I agree with you that people must choose for themselves, but with all the evidence of various treatments put forward, they can make a well informed educated choice.
bunnie
I hope I have said nothing which could be interperated as offending.

[Moeim2]

Hi Bunnie,
You state your position very well.  I also hope you aren't offended by what I wrote on Anthro's blog.  I didn't mean any offense to you, I hope you know that.  When I brought it up, I was new to this forum and wasn't sure what members would think of my spiritual choice, but I discovered that everyone is very accepting of different ways of thinking and I felt very encouraged by that.  I still do. I should have waited awhile before jumping to conclusions until I had a better feel for the views of the members here.   I thank you all for your open-mindedness.  I misjudged you, Bunnie and I apologize.  Your posts are very clinical and scientific which is great, but left me with the impression that your world is very black and white and focused on science with no room for less tangible ideas.  You are full of surprises!.  "nuf said.

We are both passionate people with different opinions and I won't try to change your mind.  There's room for both of our points of view.  Maybe someday the USA will do the right thing and provide medical to everyone so that no one has to choose between an over the counter medication and a prescription one.  But I don't see that happening any time soon.  I think that Europe is much more progressive than we are here.  It must be great to know that you can obtain medical intervention without choosing between eating and surviving.  I think that difference creates a different mindset when it comes to health and well-being, for those who discern the difference.

Blessings,
maureen

[bunnie]

Moeim, there is very very little that really shocks me, and I am in fact actually interested in paganism, although I really know very little about it. As just about every single christian celebration and its  traditions are in fact of pagan origin, I am in fact very interested in it , from the tradition, custom and ritual point of view, and the meanings behind it. There is a very large following of paganism in this country, typically in the country places.
 

It must be great to know that you can obtain medical intervention without choosing between eating and surviving.I think that difference creates a different mindset when it comes to health and well-being, for those who discern the difference.

Sorry I had to make that stand out!
You have put into those three words my very point, and it becomes very apparant when speaking with people from different countries. It isn't a case of which health service is better, all are equal here regarding the health service, but the fact that we here are simply not ever in the position ......
1) to have to seek a specialist, sometimes; as in my own case a specialist specialist! ie:  a consultant specialist in skin, who specialises in bullous disease
2) of weighing up the cost of not only seeing the GP, but the cost of seeing a consultant specific to ones needs
This was the point I was always trying to get over to Anthro. This derm from Florida was amazed that I was being given data, that he himself would have to pay for, and the interchange of information between my specialists and myself. It is all because money does not come into the equasion. However having said that, to give an example.: My derm was explaining that if ever my disease flared again to the extent that it did, he had "a card up his sleeve " . This would be IV Retixumab ( don't know if I spelt that right). The cost of this treatment is £20, 000 , which I think may be in the region of $39,406 USD.
He would have to apply to the hospital trust stating his reasons for wanting to offer this treatment, simply because it is a huge amount of money. Having said that I have had treatment costing £10,000 and £8,000 respectively , not to mention my OOKP surgery. When it was necessary to have an ectropion, to turn the lid margins out, ( they curl under when you have no tears) I was sent to the best known lid surgeon and cosmetic surgeon in this country, who was at Moorfields. London.
 

but left me with the impression that your world is very black and white and focused on science

It certainly was once, very black indeed, but one man gave me hope. My posts are just researched medical information, and what is known with regard to how the immune system works. There is still much for science to learn concerning genetics, and the role that enviromental factors may play in the ability to activate these genetic predispositions. From what I have learned so far , the one main factor most likely to be the culprit are viruses because some genes "they think" are also predisposed to certain viruses or infections, and in that way, one predisposed gene can incite the other.
Just to prove that my world is not black and white, (though it is in some things) and just for the record I am a very spiritual person in the true sense of the word.  Years ago around 1983? I had a very very bad back, I couldn't even crawl to the loo, it was agony! (and the curse of all nurses) However at the time I was running my hotel. I was really in pain, couldn't turn over in bed even. I was lying on the floor one day, on cushions, the doctor just having left. My friend was on reception, and this chap who was booked in  arrived, and said in conversation that he had hoped to meet me. He was told that I wasn't well and if he didn't mind seeing me on the floor then he could meet me! He came in , and was really concerned. He  was an elderly Polish gent from London. He said , "look Miss ... I can help you, I have a Reflexology Clinic in London, and have been teaching students for over 30 years. I had never even heard of reflexology at that time. He came straight back down, knelt at my feet, told me not to try and sit up, (I couldn't anyway)
he took my socks off, and started to make  these movements all over one foot then the other, with the pad of his thumb, moving it like a caterpillar moves , for want of a better description.
At one point he pressed just behind my heel, and i tell you I nearly shot through the roof! The pain was so sharp!. "M-m-m" , he said, I thought as much , "the 5th lumbar vertebrae". Anyway he carried on did each toe etc. took him about 3/4 of an hour. He then asked me to sit up. Well I was scared to try, because I hadn't sat up for over a week! He insisted I try and I was bracing myself for the pain, and nothing happened! I just sat up! I --Could ----not ---believe ---it!  He said now try to sit in the arm chair , and I did! It was still very sore and a deep dull ache.  Anyway, he said sit there for 2 hours and I will come back and reduce the inflammation! Honestly the fact that i was sitting in a chair was to me a miracle, even my friend was blown away, because he and the other staff had witnessed how bad I was. He came back down in 2 hours , and he took hold of my hand and said " do you believe that I can help you?" and I replied that he already had and that I truly wanted him to help me be rid of this terrible pain. He said to sit on a hard upright chair (a dining chair) and he sat on another in front of me, and I was dreading what was obviously to follow! With a towel on his knee, he asked me to put my feet on his lap, and again he did this this movement in various sequences with his thumb mainly.
I swear to you, that I got off that chair as bright as a button!! I couldn't believe that I did not have an ache even! I know it sounds crazy, but that is exactly what happened, and I have never had a bad back since!
So you see Moeim I'm not as dogmatic as you may think. I cannot explain it, I had never heard of reflexology, and although I don't fully understand exactly how it did work, I can truthfully tell you that it did. The difference is you see I do know how the immune system works and how the cells chemically interact with one another.
Maybe you have some ideas as to how people with no insurance can get medical treaments in your countries, because there is an obvious need for this information.

[Bamawing]

Ooh! I can answer that!

In Blue Ridge, Georgia, nobody had insurance, and by that I mean nobody. Medical insurance didn't exist. As a direct result, doctors charged reasonable rates... at this point, the full cost of a doctor's visit in Blue Ridge costs less than my insurance's co-pay!

But there were times when people needed serious operations or something. The popular thing to do was to have a "Gospel Benefit," where a small group of amateur singers (usually in a single family) put on a concert to raise funds. (I hate Gospel, myself, so I just popped a dollar or so into the donation boxes that lived under the poster advertising the Benefit.

Gospel is Christian music with a seriously twangy country sound. Think Dolly Parton singing about Jesus. Now make it at least twice as bad, and that's if a professional does it. Most people I know like Gospel, Christian and non-Christian alike. (The biggest gospel fan on the planet is a very devout, faithful Athiest. I mean this woman has faith. She's pretty darned amazing.) Dan likes the secular version, called Bluegrass. I like the instrumentals... but when anyone starts singing... guck.)

Let's see... I know that where I live now, we have a "free clinic" where people can come and get basic medical care. They recruit volunteers and raise money the way any other charity does, I suppose.

We also have health departments, which provide the most basic of services and charge according to how much money you make. They were serious competition in Blue Ridge, but around here most doctors are used to charging crazy high fees and getting paid by insurance. Health departments provide plenty of phamplets on health issues and little things like the flu shot, birth control, and the occasional antibiotic.

That's about it, although "universal health care coverage" is a hot topic in the presidental debates.

[bunnie]

Bama I suggested in a post previously , if someone  on here who lives in a country  where health care is paid for by the patient directly, could maybe start a thread say in general health, and sticky it. This thread for information only, where people can put forward known ways and means, in order for people to get health care if they have no insurance. Where to go and what to do in order that they do not go without medical care. It appears that some people in these countries actually  cannot afford to have medical treatment, which seems crazy in this day and age. Surely there are means and ways of getting proper medical care even if one is short of money? I just thought any info on a thread of its own would be really helpful, for anyone simply not knowing how to go about it?
By the way I love Dolly Parton, bluegrass, and I adore Bessie Smith, (Queen of the blues)  Mahalia Jackson, just about the greatest gospel singer ever known, (her singing Jerusalem and Just as I am, is (fabulous!) and also the real traditional bottle neck blues, gives me shivers of delight! Sonny Terry, Brownie McGee, Muddy Waters,Howlin'Wolf, love them all! Got just about everything recorded! I actually met, when I was 16, Sonny Boy Williamson, and got his autograph! Our local blues club in NE England , had our own local lads playing twice a week. Their group then was named The Alan Price Combo. The night that Sonny (he was quite old then) played at our club, this local group were backing him. After a truly great night, Sonny said "this group will go far". They became The Animals with Eric Burdon as lead singer, very shortly after!
(bunnie singing..." Cake walkin' Babies back home!" doo.. doo.. too..doo, ..duh .....duh )
Got me going now Bama!

[CalamityJane]

This thread for information only, where people can put forward known ways and means, in order for people to get health care if they have no insurance. Where to go and what to do in order that they do not go without medical care.

Sounds like a brilliant idea to me. In Canada, Province of BC we seem to be caught in the middle, and many services, like podiatry, eye exams have been taken away. Particularly hard for seniors on a fixed income.

Case in point is my recent (first) Podiatry visit -- I had to pay for that, but.......had it been a Derm that saw (no pun intended) to my toe, I would not have had to pay.  As Canadians say "go figure".

Jane

[Moeim2]

Hi Everyone,

I guess I'll take Bunnie's suggestion and start a new topic about health insurance issues.  I don't have much to say but maybe others will.  See you at Rant and Rave!

[Blue Bird]

 Quote from Bunny:

Sonny Terry, Brownie McGee, Muddy Waters,Howlin'Wolf, love them all! Got just about everything recorded! I actually met, when I was 16, Sonny Boy Williamson, and got his autograph! Our local blues club in NE England , had our own local lads playing twice a week. Their group then was named The Alan Price Combo. The night that Sonny (he was quite old then) played at our club, this local group were backing him. After a truly great night, Sonny said "this group will go far". They became The Animals with Eric Burdon as lead singer, very shortly after!
(bunnie singing..." Cake walkin' Babies back home!" doo.. doo.. too..doo, ..duh .....duh )

 Why, Bunnie, you little singing sensation, you. I enjoyed reading
about your forays onto the local club scene.  I couldn't let that pass without letting you know that was cool. 

 Back to serious stuff:
From what I am reading, the health care system in Great Britain,
and the UK has possibly changed relatively recently. I am interested
if anyone can tell me if there has been a changed in the system within the past few years.

The reason I ask is because some ex-patriots who are living in the US
claim that the system in Britain didn't work well, and they are convinced that it is still the same. Perhaps their experiences were from 20 or more years ago.
 
Since we have do have those who are presently using the British health care system, could anyone let me know if there have been recent changed to it that have made it work so well, as it appears to be an excellent system.

Bunnie, you have shared some of the differences seen by your derm and his visiting derm from Florida, which made me realize how the different health care systems work or do not work for the general population.
 
With all of your intelligence and expertise, Bunnie, I seriously think you should write a book on this. I guarentee it will be a best seller. Seriously.

Also a question for Calamity Jane.
Quote by Calamity Jane:

In Canada, Province of BC we seem to be caught in the middle, and many services, like podiatry, eye exams have been taken away.  Particularly hard for seniors on a fixed income.

 Is the health care system changing in Canada? It sounds like it.
Was this recent and what do you think of the health care system in Canada, in general?

 There are some relatively rude Americans, who spout that the health care system in Canada is so bad, if you want to meet Canadians,
just go to the Mayo clinic. I think that is a rude statement, and I wanted some input from anyone who knows the Canadian health care system and can comment for me. Thanks in advance.

[LIGA girl]

Have you seen the Mike Moore movie "Sicko" Blue Sky? It gives an overview of the US, Canadian, French and other medical systems and compares the best and worst features of them all. The US one comes up looking the worst of them of course, tho when I think about it, maybe that movie is not allowed to be released in the US, it is pretty critical of the US system .... I have heard it presents a  slightly biassed view, that, for instance, the waiting in Canadian hospitals is worse than he portrays, as he makes it seem that there is a very short wait in Canadian hospitals in ER.

[bunnie]

Hello blue Sky,

The reason I ask is because some ex-patriots who are living in the US
claim that the system in Britain didn't work well,

That really amazes me Blue Sky! Of course there are always problems, nothing is perfect, but the whole point is that here in Britain we do take it for granted, because we are used to it being there, we cannot imagine it not being there. It is as fundamental as the police service. The NHS has been regarded as one of the best health systems in the world since it's beginning in 1948.
Real problems started when they tried to privatise the system in many ways, for instance getting managers in from other businesses to run the different units, instead of a nursing sister. The running of a dept is no longer in the hands of a trained medical or surgical nursing proffessional, with many years experience in that particular dept of medicine or surgery, but by a business manager, who probably was a manager of tescoes or something. Now there is a huge voice saying put it back the way it was. The treatment and staffing is of course run by the senior nursing sister. The trouble now too is that a nurse cannot even give a paracetamol unless it is all written up and signed and double signed. Most of a nurses life now is in dealing with the paperwork, which has quadrupled in the last few years. The best thing is to leave you this link which tells you everything about it. Hope it helps.
http://www.nhs.uk/aboutnhs/HowtheNHSworks/Pages/aboutthenhs.aspx
Bunnie

[itchychick]

I actually find it stunning that Americans have the perception that the Canadian health care system is so awful...

While it's true that our hospitals don't have all the bells and whistles of private American hospitals, they are a far sight better than the "state" (is that the correct term?) hospitals.  I certainly wouldn't want to get sick in the US.

There are wait times to see certain specialists, because in the eighties there were huge cut backs in the number of students being accepted into medical schools, due to budget cuts.  So, we are feeling the shortage of certain specialty doctors.  Nonetheless, wait times are based on need, and if need is acute, generally speaking, you will be seen very quickly.  There are longer wait times for non-life threating conditions, such as knee replacements, etc, but if you get diagnosed with cancer, you are treated immediately.

Similarly, at hospital emergency rooms, the patients are triaged, and seen according to the severity of their illness.  So, yes, if you have come to the emergency because you have a sinus infection, or have fallen off your bike and badly scraped your knee, you will wait much longer than someone who has just had a stroke or a heart attack, or anyone who has a respiratory issue.  

As far as your question, Blue Sky, about whether our system is changing, the answer is both yes and no.  There has recently been a lot of discussion about whether or not to allow for profit health clinics.  Technically, they are not really allowed by the Canada Health Act.  However (and I'm not sure about why these clinics are allowed to operate) there are a handful of such private clinics in some of the provinces, and the idea is that people pay for proceedures such as MRI, etc.  In doing so, they don't have to wait in line for their turn in the local hospital.  

There are huge strains on the current system, mainly because of the volume of people in relation to the number of physicians, but of course, there is the cost of public health care as well.  In spite of the added tax strain that supporting a public system costs the tax-payer, most Canadians wouldn't dream of not wanting to contribute to universal health care.  The argument in favour of private clinics is that they will also reduce the burden on the public system.

However, the vast majority of Canadians are vehemently opposed to a "two-tiered" health care system as you have in the US.  Most of us find it absolutely appalling that many Americans cannot afford to go to the doctor for basic care, and we don't want to go down the road which might lead the public system to be inferior to a private one, as is the case there.  

The system is in a state of flux at the moment.   The picture is not quite as rosy as Michael Moore would paint (he's not that far off though, and if you haven't seen "Sicko", it's definately worth watching), but in all, I'd say our system compares favourably to any other country's system.  They all have their costs and benefits, and it depends on what that society values....

One of the main differences here in Canada versus the US is the amount of money doctors earn.  When my brother-in-law finished his residency in urology, a big American hospital in the southern US offered him a job that would have made him a millionaire very quickly.  An absurd amount of money.  My sister, as a derm, could have easily made triple or quadruple what she is earning here.... (they chose not to move), but it illustrated to me one of the biggest differences between our two systems.   Here, necessary medical services are paid by the government for everybody, and physicians are allowed to bill what the provinces say they can... there are caps.  (They can bill extra for non-insured services, such as cosmetic proceedures...)  

Now, my sister and b-i-l are very well to do by anyone's standards, and have a huge house,  and two nice cars, and take regular holidays etc etc etc..., more than comfortable by anyone's standards,  but they are nowhere near as wealthy as they would have been if they lived in the States...  but this is what I mean by societal values... here there is an undercurrent of social responsibility, that we should take care of each other, and if that means we do with a tiny bit less, so that our tax dollars can help provide things that some people can't afford, most people are okay with that.  Similarly, it's a mindset that makes a graduating doctor feel okay with the decision to make less money, for the intangible benefit of living in a society that values those ideas.  

I don't want you to think that I'm being critical of American values at all, though.... Americans that I know are the most kind-hearted and generous people in the world, and they would go to bat for their neighbours in a heartbeat, and they pull together when necessary like no other country in the world.  The difference is the firmly entrenched American ideal that if you work hard, you can acheive anything, and that no one has the right to take anything from you that you worked hard to build.  

At the risk of dragging this on way too long, I think it is also a fear of big government... the very thing that the American revolutionaries fought to free themselves from.  It's this unfettered desire to be free as an individual, and not have anyone tell you what to do with your life or your money, let alone a govenrnment which may squander it. (Btw, did you know that Americans are the biggest per capita donors to charities in the world?  So it plainly has nothing to do with generosity of spirit...)

Wow.  Sorry this is so long.  I hope this answered your question?

[bunnie]

One of the main differences here in Canada versus the US is the amount of money doctors earn.

The above ladies differs yet again here. All doctors, specialists, everybody who works for the NHS are paid by the NHS Trust they work for, but all trusts are controlled by government policy. However most consultants have a private practice which boosts their income. Patients who choose to go private, pay for everything from the moment they see him. They do not get better treatment, they simply get their own room, visitors can come and go, and they can be seen and have their operation quicker. That is all. As Itchy said too, necessity, and need, take priority no matter who or what you are. Take Guzzi's dad for instance . His op was postponed, maybe because the surgeon had to deal with an emergency or that another different case and the  surgeon of that patient, needed that theatre quickly. Our teaching hospitals too are full of students from abroad training in our hospitals, and once qualified many return home.
Bunnie

[LIGA girl]

Our system in Oz sounds like the Canadian one to me, from what Itchy has said above and from what I saw in "Sicko". I can give some examples from my own experience which make it seem a very enlightened one too ...

I cannot afford medical insurance, and from the days when I did have it it seemed to actually disadvantage the patients who went in as private patients in an emergency situation, such as my son who was admitted to hospital several times as a child. If he went in as a public patient it cost us nothing but if he went in as a private patient we had to pay a gap payment (what Americans appear to call copay) and he got the same standard of care from the same doctors, this did not make sense to me that to pay insurance entitled you to pay a gap payment as well ....

Now that I have a long term medical condition and cannot work much due to that, I cannot afford medical insurance which costs several thousand dollars a year, but it does not seem to have affected my access to good medical care. There are some specialists who are in private practice who charge high fees but the ones who are attached to hospitals (who are the ones I see as they are the best and can get me cheap access to the expensive drugs that patients such as me need) are the ones I see, and I have found that my GP knows all sorts of ways of getting my tests and meds for free or very cheaply. I did not know this before but then I was not in a position to need access these services, they are there for the doctors to use at their discretion for patients who are in needy circumstances and who have high level medical needs.

To give a personal example about a family member such as Itchy has done ...

my daughter went to the States recently and worked over there for several months, she had taken out travellers medical insurance before she went. She got an infection over there which required antibiotics, but when she went to the hospital she was told they would not treat her as some travellers medical insurance does not cover such circumstances and if she were to pay it would cost her ....$US5,000 ... for a course of antibiotics that here would cost $AU15 (about $US10)! Someone told her that there was a nearby medical service for homeless people she could go to so she did that and got her treatment for free. That story blew me away, I could not believe it when she told me.

We also have some aspects of the British system, I can see from Bunnie's post. We have similar waiting lists for non urgent of surgery and we have overseas doctors who come here to train in our hospitals, they work for the doctors I see who have registrars from the Philippines, Scotland, China, India, to name a few countries ....

[bunnie]

and if she were to pay it would cost her ....$US5,000 ... for a course of antibiotics that here would cost $AU15 (about $US10)!

Wow! that is shocking!

Someone told her that there was a nearby medical service for homeless people

But why should there need to be? I mean I understand why there is one, but in Britain anyway, it doesn't matter if you are on the streets, or not registered with a GP, everybody is seen at their local hospital, or wherever one happens to be.
It's hard to get one's head round it really. How was it Lg that you finally saw your derm regarding payment. Did your GP know ways round it so you got her services free? Do you pay for anything at all?
Are there clinics in America that people can go to if they are ill and have no money? Would they be admitted to hospital if necessary, even though the docs know they cannot pay?
Bunnie

[LIGA girl]

in Britain anyway, it doesn't matter if you are on the streets, or not registered with a GP, everybody is seen at their local hospital, or wherever one happens to be.

It is the same here, Bunnie ...

How was it Lg that you finally saw your derm regarding payment. Did your GP know ways round it so you got her services free? Do you pay for anything at all?

I have to pay a % of the fee, about 30%, then once I reach a "safety net" of $500 for the year I pay virtually nothing, that happens round June usually. I pay $4.90 for prescription drugs and for some of them I get months' supply for that amount.

Are there clinics in America that people can go to if they are ill and have no money? Would they be admitted to hospital if necessary, even though the docs know they cannot pay?

If one is to believe what is in "Sicko", patients are literally dumped on the streets if they are unable to pay. It is an aptly named movie .....
LG

[CalamityJane]

Hi all:

Briefly an answer to Blue's question,

Quote
In Canada, Province of BC we seem to be caught in the middle, and many services, like podiatry, eye exams have been taken away.  Particularly hard for seniors on a fixed income.

 Is the health care system changing in Canada? It sounds like it.
Was this recent and what do you think of the health care system in Canada, in general?

I'm in BC, and Itchy is in a different province, and that in itself makes a huge difference. The services that disappeared from BC did so in 2002 I believe when the latest Government was elected. They tore up Collective Agreements w/many of the unions, including the Hospital Workers and Auxiliary services. Along w/others, Podiatry, eye examinations have to be paid for. It gets complicated. Physio you have to pay for. I have a "Plan", but the 'plan' only pays $7.00 per visit to the physio. Physio's charge $65.00 approx. for initial visit and about $35.00 thereafter. My plan has a deductible of $250.00 each calendar year. I think if I reach $1,000 (copay), then all the coverage is free, or nearly so. All of the Canadian provinces are different. However, I believe all the Provinces get many $$$ from the Federal Government, and we in BC believe, (or some believe) that the East is favoured. Our current problems come entirely from the current provincial government. Is that the same for you LG?

BC residents pay premiums for their medical coverage on a sliding scale. Prescriptions they have to pay for. Regarding hospital visits, through Emergency, by Ambulance, there is firstly triage, which is a good thing. If you drive yourself as Itchy notes, you will have a wait. In BC, some folk have waited many, many hours, including the elderly in hallways, office space, wherever they can be put. Our wait lists are horrendous, despite the governments claims. People waiting for hip/knee replacements for example, will often die while waiting. The government calls this "keeping up". The wait for specialists is sometimes very long indeed. The last Derm I saw (who did really nothing, and was not the slightest bit interested), I'd waited a year to see.

There is access though for everybody, if you are on the streets, there is help available. That's a huge plus IMO. I think our system is more like Oz, and if pushed I'd say more like UK, rather than USA. I have an acquaintence who is a US citizen, living here in Canada. Has a US passport. She can't go back to live in the USA simply because they cannot afford the medical insurance. They are in their 70's and can't risk it. In BC they feel secure and I do believe there is some security here. I also believe at times you need to be desperately ill, or nearly dead for it to kick in.

People come in droves across the border here from the US to have prescriptions filled. (Is it the same where you are Itchy?) They do that because it saves them hundreds of $$$. There was a huge debate about it, and I don't know the resolution, if any. 0T0H, Canadians flock across the border to buy US gas I'm not surprised at LG's story re her daughter. In BC, she would have had to pay upfront I believe, but would have been able to claim on her travel insurance upon her return.

Very interesting post Itchy, gives me an idea what it's like in your Province.

Jane

[bunnie]

Hi Ladies
LG

I pay $4.90 for prescription drugs

I think ours are 2 1/2x more than that, but we don't pay another penny to the doctors or for services, except of course the Nat.Ins.Cont. which is deducted from the wage packet. I get everything free except my specs, but I do get a reduction.
I would really like to see that film!
I just wondered if anybody could leave advice on the thread that moeim has started, as to ways and means people in America (and other countries) can get treatment. There must be other ways, so that people, as moeim said, do not have to make a choice between health care and other necessities.
Bunnie

[itchychick]

Jane, Toronto isn't really a border city, as it's quite a drive from the nearest bridge crossing over Lake Ontario, so I don't know how much "cross border shopping" there is for medical care.  I do remember several months back, there was a lot of press over Americans getting their prescriptions filled on-line by Canadian pharmacies, but I don't remember the reasons (it must have been cost related)

As far as prescription coverage goes, here in Ontario seniors (over age 65) and people of Social Assistance have to pay $6.11 for every prescription, regardless of whether the prescription costs $10 or $200.  There are also some drugs which are not covered - for example, Protopic is not covered, so if a senior wanted it, they would have to pay out of pocket.  Which drugs are covered is decided on the basis of efficacy and cost.  If there are cheaper drugs which have similar effects, those will be covered before the less proven, more expensive ones.

Having said that, most employers have drug plans that employees are covered by.  We, for example only pay 10% of a prescription fee, so my $100 script for Protopic costs us $10.  These private plans vary, naturally.

As far as other types of health care, in Onatario we are not covered for massage therapy, physio (unless it's in a hospital setting for rehab purposes after, say, a stroke...), optometry, dentistry,  etc.  A few years ago, however, they reintroduced free eye (optometry) exams for children.  And I recall that when I was little, there was free dentistry for kids as well... but I think that may have changed.

The thing to know about Canada is that there are really 14 different health care systems, as every province is slightly different, and the military has it's own system as well.  What is constant is that there is some form of universal coverage everywhere.

Unfortunately, I can't offer any advice to Americans who are without insurance - my dh who works in the industry and worked in the States for a few years knows of nothing to suggest either. 

If you all are interested, I'll see if Tim can put up a link to his company's website, which details the specifics of each provinces health coverage.

[CalamityJane]

Hi Itchy, no, you are not a border city! Just because I can see the US, I think everybody else in Canada can as well.

Having said that, most employers have drug plans that employees are covered by.  We, for example only pay 10% of a prescription fee, so my $100 script for Protopic costs us $10.  These private plans vary, naturally.

My plan pay 80% after I have met my deductible of $250.00.

Yes, every province is different. Our is similar to yours in many ways, and all the diagnostic tests are "free", if you don't die before you get in! We are much better off than US. For me it would be very unnerving if I couldn't get to a doctor for even a small thing w/o paying a huge sum.

do not have to make a choice between health care and other necessities.

I don't know of anything here, but then again, we are not in that situation. Everybody has access and there are social agencies that will pay for prescriptions.

[LIGA girl]

Hi ladies

to answer some of your questions, ours is a national system as far as the drugs and the rebate for doctors' visits go, but the hospitals are managed by the states here. So the rebate for your fee to see a doctor is standard nationally (though docs can charge what they want and some will bulk bill Medicare for patients such as me who are on benefits, which means I dont have to pay anything). Specialists are different as I said, I have to pay for most of mine but some are attached to the hospital and are free. The waiting to see a specialist can be very long (6-8 months) here too but if you are an urgent case the GP can hurry things up and that is what has happened to me with my illness I have never had long wait since getting it. When I needed to see my derm in Sydney I didnt even need to have the GP pull those strings for me, I easily got an appt and I think it is because she specialises in bullous diseases so there arent that many patients around with what we have and she is keen to see as many as possible. I have to say that now I am in this category of patient that the system has really been good to me, whereas before I was just a normal person who went to the docs occasionally and had to pay for everything (but it still came to a lot less than I pay now as I only went once or twice a year for fairly minor things).

Regarding the costs of our drugs, the ones that are $4.90 are ones that are on  a national list, everything else is much more and my HRT is like that. There is also a scheme where you get 5 repeats for the price of one for certain drugs if you have certain chronic diseases and I get my cortisone cream and scalp lotion and my erythromycin under that scheme. The new drug I am going to be having, Rituximab, is a very expensive one and an application has to be made to a hospital committee to approve it for patients and they do so on the basis of the severity of the disease and the other number of drugs that have been used on that patient without good outcomes. The drug Mycophenylate mofetil that I am on now is also in that category. I get it for $4.90 even though its full cost is $600 per month.

LG

[bunnie]

Rituximab, is a very expensive one and an application has to be made to a hospital committee to approve it for patients and they do so on the basis of the severity of the disease

Exactly the same here, but I wouldn't have to pay anything. This is the card my derm has up his sleeve for me LG should it break down again. As I have had the disease many years now he is hoping it is finally slowly burning itself out. My worst problem now is if these cells change yet again into cancerous ones. I am very anaemic even though i am only on 50mg of dapsone now, but  my bloods are low as if I was on Interferon or something, due to the treatments I have had in the past. I do know for certain that here in Britain the cost of IV rituximab is £20,000. We were discussing it at my last appointment, end of January.
Bunnie

[LIGA girl]

I would get the rituximab for free too Bunnie and he is confident it will be approved for me as he is on the approval committee and I have tried so many things. I didnt know it was that much, L20,00 would be about $50,000 here .... he said the treatment was valued at higher than $10,000 and I didn't ask how much higher ....

I am lucky that my bloods are still in the normal range, it must be a miracle after what I have been through, tho I know you have had many more drugs and bad reactions to them too.

LG