fake medical advice website dangerous HFI information

[ukbill]

I was recently looking for some spellings of enzymes related to HFI / Fructosemia when I googled Fructosemia up popped this web site at the top of the list

www.rightdiagnosis.com/

To my not total surprise the site has the condition completely wrong.. I have cut and pasted the first few paragraphs here for your delight!

"Introduction: Fructosemia

Description of Fructosemia
Fructosemia (medical condition): A rare harmless asymptomatic condition caused by a lack of the."

When you click on the more link it takes you to the Fructosuria page where it continues..

"Fructosuria: In hereditary fructose intolerance, a disorder usually seen in children, the body is unable to metabolize the natural sugar fructose. ... more about Fructosuria.

Fructosuria: A rare harmless asymptomatic condition caused by a lack of the liver enzyme called fructokinase which is needed to turn fructose into glycogen. More detailed information about the symptoms, causes, and treatments of Fructosuria is available

Symptoms of Fructosuria

Click to Check
Sugar in urine
Asymptomatic
Fructose in urine
Presence of fructose in the blood
more "

Err no just how wrong can they get

I have tried to email them but every email comes back undeliverable.. Just tried their feedback email to see if they are replying or if this is a defunct email address as well?

They seem to be either an Amazon company or certainly using their web hosting services for their web site. all the contact information (emails) with their WHOIS registration are invalid.

Further following of their links comes up with the following about Hypoglycemia and HFI..

"Rare Causes of Hypoglycemia
Fasting hypoglycemia occurs when the stomach is empty. It usually develops in the early morning when a person awakens. As with other forms of hypoglycemia, the symptoms include headache, lack of energy, and an inability to concentrate. Fasting hypoglycemia may be caused by a variety of conditions such as hereditary enzyme or hormone deficiencies, liver disease, and insulin-producing tumors.

In hereditary fructose intolerance, a disorder usually seen in children, the body is unable to metabolize the natural sugar fructose. Attacks of hypoglycemia, marked by seizures, vomiting, and unconsciousness, are treated by giving glucose and eliminating fructose from the diet."

Obviously they too are under the impression that Glucose is HFI safe when it is very unsafe indeed! IF they respond to my email (I might try one of their USA phone numbers tomorrow if no reply to my emails) I will bring this to their attention... rather forcibly!

[colormist]

Hi Bill,
I recently came across some youtube videos that explained the difference between fructosuria and HFI/fructosemia. HFI/Fructosemia is missing Aldolase B and Essential Fructosuria is missing fructokinase.

So, we know what HFI does to the body:
- Liver starts processing the fructose with fructokinase, can't complete step 2 because aldolase B is missing, liver panics and hordes all the glucose until the kidneys flush out the half-processed fructose.

With Essential Fructosuria:
- Liver can't process the fructose because there is no fructokinase, fructose is flushed out of the body by the kidneys.

From the sound of things, with the research going on with Doctor Tolan, they're looking to give HFIers a supplement that will make our livers function like we have Fructosuria. We still won't process fructose, but we won't have liver damage or hypoglycemia because our livers won't be attempting to process the fructose.

That is really weird that their article would link to the Fructosuria page from the Fructosemia page, though. They are very different metabolic disorders that require different treatments.

[ukbill]

And the key point is it says its not dangerous or life limiting..

I am all for Dr Tolans work with the "cure" although it may give our kidneys a kicking trying to discharge 25g of fructose from jsut 1 glass of coke....??

[ukbill]

Yes as expected all the email addresses are fake and not connecting to anyone..

I will try to contact Amazon who seem to be hosting the site.

[ukbill]

Just sent the following email to the web site registras for Amazon who are hosting the site

Ref:- www.rightdiagnosis.com/

Is one of your hosted web sites and contains dangerous potentially lethal medical advice.

I have tried to contact them but every email address I have tried to contact them on comes back as invalid and not connecting to an email server.

The so called medical advice mixes up two genetic conditions one which is not life threatening and one that is.. However the one that is life threatening need not be so as long as a strict diet is followed.. I am now 60 years old and seem to be doing all right as are a few others who stick to the diet closely ..

The main problem is the condition is little known about because most of us die in early childhood as a direct result of being fed foods that are dangerously toxic to our Livers, Kidneys and Brains.

The two actual conditions it is mixing up is complicated by one of the conditions having two names.

Hereditary Fructose intolerance and Fructosemia are the same condition and potentially lethal if a strict diet is not followed. Fructosuria is not life threatening and although a low Fructose diet is required to avoid Kidney issues, it is unlikely to be fatal if fructose is consumed over a long period.. unlike HFI / Fructosemia which will prove fatal or severely damaging to liver, kidneys and brain function.

So you will understand that clarity and giving the right advice is critically important.

www.rightdiagnosis.com claims to be the premier site for medical advice.. and to want peoples feedback and yet the emails do not connect..

It is also right at the top of the Google search lists making it gain a lot of hits from people who are looking for valid accurate medical information not total dangerous rubbish.

I also looked up their listing for SIDS (Sudden Infant Death Syndrome) and the Google search also put this web site near the top of the search list, and found this also to be totally inappropriate and confusing, which for a recently bereaved parent or grandparent is not what they need believe me on that point if on nothing else.

All attempts to reach them have failed over the last week. So I ask you to please pull this site until they can prove their advice is checked and sanctioned by medical professionals who know what they are about medically, not just trying to make a fast buck.

I look forward to your prompt response.

Yours sincerely

William Armstrong


My searches using "whois" returned the following information :-

[ukbill]

The registers for amazon is fake also.. GRRRR getting angry now.. Phoned Amazon in the USA and they denied all knowledge of the site even when I gave them the server IP address that is registered to Amazon on which the site is hosted..

SO I spoke to the BMA (British Medical Association) I thought go straight to the top of the UK medical profession and get kicking ass.

I spoke to several people in the Media Department all of whom were concerned and promised to send around emails and ask the people who are discussing policy with the Government what to do and how to stop this happening.

I also reported the site to Google as a spam site.. had no response from google yet but also no bounced email so it should be read by someone at least..

Not sure what more I can do??

Perhaps phone the BBC and see if they have a medical program that might take an interest or perhaps their "Click" tech program that is broadcast world wide vie the World service??

Any suggestions form over the water (USA) as to how we can stop some shyster making a fast buck by peddling fake dangerous medical information??

OR anyone with a genuine phone number for Amazon Web services??

Any help would be good..

Keep smiling