should i pay $90,000 for stem cells?

[Learner1]

@SB_1108 Thank you for sharing your experience with us. We weren't there, and able to judge the situation for ourselves. You were and you made the best decision for yourself.

There was a first time a heart was transplanted, the first time Lazik eye surgery was done, the first time radiation or immunotherapy cured cancer. Then there were early followers of these treatments who had to plunge forward out of faith (and maybe desperation) as there were no random double blind placebo studies. Some lived and some died, but they eventually became more commonplace in modern medicine.

There have been other, equally maverick treatments that turned out to be barbaric, dangerous and were eventually discontinued.

Progress is made by those who dare to gamble on something new or different.

Thank you for being a pioneer...please keep us updated. Your honest opinion (and your experience) means a lot.

I wish you all the best.

 

[Undisclosed]

There doesn't seem to be any room for real discussion on this thread so I think the best thing for me to do is just see how it goes over the next several months. Regardless of the outcome, I will keep everyone updated. Hopefully I can report some positive changes. If not, that is ok too. I just want to help someone else with ME/CFS make an informed decision about whether stem cells might help us. My goal in this entire process is to help our community and my contribution is being a guinea pig.

So what is the 'real' discussion to be then? To be able to make an"informed decision" one has to critically weigh the evidence of how stem cells might help us. The information offered by this Battiade person related to stem cells is unproven quackery. A person couldn't possibly make an informed decision if they relied on his information. It really isn't helpful to the community not to have conversations about these things. It adds to being able to make an informed decision when we do.

 

[Valentijn]

There was a first time a heart was transplanted, the first time Lazik eye surgery was done, the first time radiation or immunotherapy cured cancer. Then there were early followers of these treatments who had to plunge forward out of faith (and maybe desperation) as there were no random double blind placebo studies.

Those developments were based on a thorough understanding of the biology involved and science in general. That's quite a step up from having blind faith in quackish concepts.

 

[Alvin2]

Those developments were based on an thorough understanding of the biology involved and science in general. That's quite a step up from having blind faith in quackish concepts.

Indeed, even drugs like Rituximab, we may not know exactly why it works but its being tested in a legitimate clinical trial. If it proves itself scientists will try to figure out why it works.

 

[Learner1]

Those developments were based on a thorough understanding of the biology involved and science in general. That's quite a step up from having blind faith in quackish concepts.

If you really want to read about how modern medicine developed, "The Greater Journey: Americans in Paris," by David McCullough gives an eye opening account of what went on. (Spoiler: A lot of patients died after on the fly experimentation by arrogant doctors.)

A patient in my cancer support group recently died after a $200,000 experimental immunotherapy that he was the 8th person to get went wrong, while my experimental cancer treatment was high dose vitamin C, curcumin and artesunate done by a naturopath who knows more about medicine and biochemistry than any MD I've seen. I'm alive and cancer free and thankful due to this "quackery" which is based on sound science.

My father was in the first clinical trial for Rituximab and had a stem cell transplant. They helped for awhile, but he died of the same cancer 8 years later after having been the first person with his cancer to survive more than a year.

It was experimental at the time. Was it a success? Well, his immune system was compromised, he got a bad case of shingles in his head, then had a stroke a year after the cancer treatment which ruined his quality of life.

I don't trust any doctor completely. I don't trust FDA drug trials - the process is too corrupt. I try to educate myself on all treatment modalities and have concluded that some are too fluffy, some too risky, some show promise and might be worth a try, and some are a "why not?".

Bashing things as quackery serves no purpose, and attacking fellow patients for bravely trying something that may be out of your comfort zone isn't productive.

This site is for learning and sharing ideas, and I sure hope that continues, because I'm hoping to get well. I've already learned things that have helped me and am considering some things (like Rituximab and stem cells) that I never would have considered before. I don't know what's going to work but stifling sharing of ideas and making people not want to return and share their experiences may keep each of us from valuable input in our treatment journeys.

 

[CFS_for_19_years]

A patient in my cancer support group recently died after a $200,000 experimental immunotherapy that he was the 8th person to get went wrong, while my experimental cancer treatment was high dose vitamin C, curcumin and artesunate done by a naturopath who knows more about medicine and biochemistry than any MD I've seen. I'm alive and cancer free and thankful due to this "quackery" which is based on sound science.

Were you required to be under the care of an MD in order for the naturopath to treat you since you had a cancer diagnosis?

 

[Learner1]

Were you required to be under the care of an MD in order for the naturopath to treat you since you had a cancer diagnosis?

In Washington state, we have an "Every Provider Law" which allows naturopathic doctors (who have gone through demanding education in medical school, just as MDs have) to practice on equal footing as MDs. Therefore, patients can choose what is right for them. And the major cancer centers have relationships with naturopathic doctors.

However, I also had an MD oncologist who was very open minded to what my naturopath was doing. Therefore, I got the best of both worlds.

And, for my CFS, not one of many MDs I've been to in the Seattle area was able to figure out what was wrong with me or offer me any sort of treatment. They couldn't even properly read the lab work my naturopath had ordered from a conventional lab that was quite abnormal.

I flew to another state to see an MD with expertise in CFS who was able to take what my naturopath did and drill down further to offer me further treatment. And, the treatment my naturopath has offered has kept me out of a wheelchair and from being bedbound. He's done a wonderful job.

A big toolbox full of good tools and a team of collaborative doctors of any stripe offers the best chance of success. I don't have to use them all, but its worth understanding what they are and the pros and cons of each.

 

[Undisclosed]

In Washington state, we have an "Every Provider Law" which allows naturopsthic doctors (who have gone through demanding education in medical school, just as MDs have) to practice on equal footing as MDs.

I don't believe that ND's are educated in medical schools and I believe they don't receive a proper 'medical' education because if they did, they wouldn't practice as a Naturopath. Just found a bunch of stuff out about how they are educated. Quite shocking in some cases.

The scope of practice of Naturopaths varies widely depending on the State, or Province they work in.

Washington state has one of the widest scope of practices.

Naturopaths are accredited by the US government because they meet administrative criteria. They don't accredit naturopaths because their naturopathic curriculum is medically sound. Naturopaths accredit their own programs. That's a huge problem.

The problem with naturopathic programs accrediting themselves re: curriculum is that they play fast and loose with biomedical science.

Generally the curriculum is made up of:

• homeopathy
• herbalism
• hydrotherapy
• craniosacral therapy
• chiropractic manipulation
• naturopathic philosophy.

Some classes are taught with the same title as courses that you would find in a medical program. However, the content is inferior.

As far as their 'medical' education, naturopath students take anatomy, pharmacology, histology, and other basics but they are not taught by faculty members with academic expertise. Naturopathic textbooks are often used too.

Students often get 'medical' education in material that would never be taught in medical schools such as having to read anti-vax books. I just read an account of an ex-ND who wrote that he learned things in his 'medical' course such as putting sliced onions over a child's ear for an infection and other folk remedies such as wearing wet socks at night to boost the immune system

Naturopathic students receive much much less time in actual clinical training with patients. They are not trained in medical standards of care.

Naturopathy is so rooted in prescientific vitalism and pseudoscience.

Some very informative reads:

I am an ex-naturopathic doctor. I started this blog to expose naturopathic medicine and protect patients from the dangerous and incompetent practices rife in my former profession. —Britt Marie Hermes Read more.

This is another post in the naturopathy versus science series, where a naturopath’s advice is assessed against the scientific literature. -- Naturopathy vs Science: Facts Edition

I want the public to fully understand what naturopaths are, because I don’t think that they do. This is a situation common to many cults and pseudosciences – there is a superficial layer of reality that represents the public face of the group, largely crafted for marketing purposes, and then there is the deeper layer of utter nonsense that most people don’t see. Homeopathy is a great example. Unless you are a skeptic or true believer, chances are you think homeopathy is some form of herbalism, rather than the magic potions that it is. http://theness.com/neurologicablog/index.php/naturopathic-delusions/

A naturopathic “apostate” confirms that naturopathy is a pseudoscientific belief system -- http://scienceblogs.com/insolence/2...uropathy-is-a-pseudoscientific-belief-system/
Naturopathy is 80% quackery, 19% science-based modalities like diet, exercise, and lifestyle changes rebranded and infused with woo, and maybe 1% valid medicine. Yes, I know I’m probably being generous given that naturopathy is based on a vitalistic, prescientific worldview and originated in the 19th century German “natural living” movement, but I’m in a generous mood right now. The reason I’m in a generous mood is not because naturopathy has suddenly become less quackery than it was. Just view a few of my posts on naturopathy if you think my opinion’s changed. I still believe that naturopathy is pseudoscience and quackery, and naturopaths are only too happy to confirm that assessment discussing cases with each other when they think no one else is listening.

A Close Look at Naturopathy

 

[Learner1]

@Kina The drivel you have shared is not consistent at all with the functional medicine approach my naturopathic doctors use, which includes lab testing and use of nutritional, botanical and pharmaceutical substances.

 

[SB_1108]

I don't believe that ND's are educated in medical schools and I believe they don't receive a proper 'medical' education because if they did, they wouldn't practice as a Naturopath.

If this is the direction Phoenix Rising is headed then I definitely need to switch forums. I've always appreciated the intellectual discussions I've had with others here but for our forum moderator to completely dismiss naturopathic medicine is a disservice to people suffering with ME.

 

[Undisclosed]

Just a few more things and then I will stop.

A patient in my cancer support group recently died after a $200,000 experimental immunotherapy that he was the 8th person to get went wrong, while my experimental cancer treatment was high dose vitamin C, curcumin and artesunate done by a naturopath who knows more about medicine and biochemistry than any MD I've seen. I'm alive and cancer free and thankful due to this "quackery" which is based on sound science.

Where is the sound science performed with human subjects that supports high dose Vitamin C, curcumin and artesunate as an effective treatment for cancer. I see a lot of stuff about this written on Naturopathic websites. Don't you think that if these substances could cure cancer without radiation, chemotherapy, surgery being involved that it would be widely known.

Bashing things as quackery serves no purpose, and attacking fellow patients for bravely trying something that may be out of your comfort zone isn't productive.

I am not sure what people are adding is 'bashing'. It serves a purpose to discuss quackery, just as it serves a purpose to discuss anything else. To gather knowledge.

This site is for learning and sharing ideas, and I sure hope that continues, because I'm hoping to get well.

Absolutely and discussing and sharing ideas includes discussing both positive and negative information.

@Kina The drivel you have shared is not consistent at all with the functional medicine approach my naturopathic doctors use, which includes lab testing and use of nutritional, botanical and pharmaceutical substances.

It is not 'drivel'. Naturopaths do not get the same education as Medical Doctors, they are taught pseudoscience... ... ... .

Yes naturopaths in some States use lab testing, and pharmaceutical substance but they still base their practice on the pseudoscience they learned to become a naturopath.

Obviously, you are not going to read or take in anything anybody says to you that you consider negative. I am just providing information that I have found.

Take it or leave as we all can choose to do.

 

[Undisclosed]

If this is the direction Phoenix Rising is headed then I definitely need to switch forums. I've always appreciated the intellectual discussions I've had with others here but for our forum moderator to completely dismiss naturopathic medicine is a disservice to people suffering with ME.

The direction PR takes is up to its members. I am not posting as a 'forum moderator', I am posting as a regular member. If I have anything moderator-like to say, I will use a blue colored bolded font. Moderator stuff has to do with the rules and regulations, other than that I post what I think, feel and feel strongly about. Members are free to agree or disagree with me and they do. I always enjoy a good debate. I don't believe I should be censored because I volunteer for the forums.

 

[TenuousGrip]

Generally the curriculum is made up of:

• homeopathy
• herbalism
• hydrotherapy
• craniosacral therapy
• chiropractic manipulation
• naturopathic philosophy.

Maybe there would be value in posting Bastyr's most recent ND curriculum:

https://bastyr.edu/sites/default/files/images/pdfs/curriculum/2017-2018-ND-Curriculum.pdf

I see this thread as heading farther and farther away from anything that could be reasonably considered to be productive.

JMHO. YMMV.

 

[adreno]

Bashing things as quackery serves no purpose

Exposing something as quackery certainly serves a purpose. It helps to inform members to avoid rip-offs and potentially dangerous treatments that lead nowhere.

Making unsubstantiated claims about stem cell treatment is quackery. Bioenergetic diagnostic machines are quackery. Vitamin infusions are quackery, if you claim that they will treat any disease. Those are the facts.

Now, if you want to give this *cough* doctor *cough* all your moneys, then that is entirely your prerogative. But I certainly feel it is productive to warn others against taking the same route. The OP asked for our opinion, and I (as well as others) have given it. You can call that "stiffling of ideas" if you like.

 

[Forbin]

Bio-scan is a bioenergtic [sic] blood test. It uses scalar wave technology to perform an in-depth health analysis. Multiple blood parameters such as cholesterol, hormones and vitamins can be measured simply by holding an electrode in the hand for 60 seconds. According to the manufacturer, the results of this test concur with standard blood tests with over 92% accuracy. We use this as a quick and painless screening and educational technique for our patients. http://www.infusio.org/prevention/bio-scan/

No need to go on and on. You had me at "scalar wave technology."


From the BIOSCAN-SWA website:

Science and conventional medicine do not acknowledge the existence of information fields, their medical and other meaning and BIOSCAN-SWA with its usage because of missing scientific proof according to conventional medicine. Further, we particularly point to the fact, that no healing promises are given by using any of our products of the VIVOBASE family (HOME, CAR, MOBILE, CORPORATE). Medical, kinesiologic, radiesthetic measurement methods, which we use, are not accepted by conventional medicine. Efficacy may be not fully visible to everyone. Liability claims are excluded. http://rilling-group.com/en/bioscan-swa/

 

[tudiemoore]

Maybe this has been discussed and I missed it--how many people have been treated with stem cell therapy? At this organization, or any group of locations?

How are they now--six days, six weeks, six months, six years later?

Are there treatments to be explored, and possibility used, that have some proven outcomes?

I truly do understand that desperation. I am finishing three and a half months of IV antibiotic infusions, will follow up with three months of oral antibiotics.

One of the big things I considered first is this: at my age (I will be 75 this December) maybe I should just accept my greatly diminished capacity to live life?

I was concerned that treatment would be phyisically stressing, I was concerned about having a Picc line, I would have to travel an amount of time each day (her treatments are seven days a week), I was concerned about finances.

I am not cured. I am having reduction in brain fog and have improved stamina.
The doctor I am working with has an excellent educational background and outstanding referrals. She has had good results with this treatment. I trust her.

I am sharing this with you, and for all of us, only as something to think, about based on my experience.
With good wishes for health improvement--

 

[MeSci]

Maybe this has been discussed and I missed it--how many people have been treated with stem cell therapy? At this organization, or any group of locations?

How are they now--six days, six weeks, six months, six years later?

I got lots of hits from a search for 'stem cell' here, but none looked promising that I looked at.

 

[tudiemoore]

I seem to recall--foggy brain here--reading about a doctor who took a group of patients out of the country for stem cell treatment. I "seem" to recall very poor results the patients and that doctor ended these efforts.

I might have read this on PR but wander all over, so to speak, once I get into ComputerLand!

I want to be very careful with these statements because I truly am vague about these details but this is a well-known doctor who has treated many patients with ME/CFS

 

[EtherSpin]

@SB_1108

There have been other, equally maverick treatments that turned out to be barbaric, dangerous and were eventually discontinued.

Progress is made by those who dare to gamble on something new or different.

Thank you for being a pioneer...please keep us updated. Your honest opinion (and your experience) means a lot.

I wish you all the best.

you are correct about the genesis of various treatments BUT the difference is, we have a practitioner here claiming a *massive* success rate , the news of which would have already spread like wildfire through the community and the practitioner / Doctor/whatever if responsible would have taken the results to various CFS related organisations and researchers in the field to hurry up and save millions of people from misery but instead, he is making a big claim with no back up and asking for 90 thousand dollars

 

[Daffodil]

@Learner1 did the vitamin C treatment actually get rid of the cancer completely? I thought it could make it sort of a chronic, survivable condition but was not aware it can appear to get rid of it altogether!

thanks