One Sick Mother

The Scams Just Don't Stop...

A new reader, Kathryn, who was angered by my post exposing the OHS scams, has done some Internet noodling for herself and uncovered a whole new series of stuff (thank you, Kathryn!).  I am working to get the whole list together. If you are interested in helping, please e-mail me, because there is a LOT of stuff here and I have been extra seizurey of late, therefore my concentration and attention span is particularly poor right now.

You know, when I was initially doing the research on scams, I was saying to myself there had better be nothing in here claiming to cure Autism or Ehlers-Danlos Syndrome. Because that, my friends, would have angered me beyond reason. I was quite angry enough at the whole "rat poison and hairballs as a cure for Parkinson's thing. I think had I found an 'AutieTab' or similar, I would probably have started shopping for explosives and booking a flight to Norway.

So I am glad that enough time has passed now since I finished part III,  for me to look this little beastie in the eye and only get mad enough to turn the air a nice dark shade of indigo...

Hey, guess what? Danlotab is a completely guaranteed and clinically proven herbal treatment for Ehlers Danlos Syndrome!  Now where did I hear THAT before?  Oh,  I dunno... Only about 70 other places!

The audacity of these people just floors me.  I mean, it floors me each time. I just don't get immune to this, ever.  And every time I think I have found them all, and reached the end of this story, another thread shows up. I pull on the new thread only to find it is attached to a whole set of other threads and the web just gets bigger and bigger...  I wonder how many people work fulltime to perpetrate these scams?  And I wonder what they would achieve if they used their powers for good? Because this operation, for all it's ignoble, low-lived dispicability, is actually quite clever and probably requires quite a lot of resourcefulness and ingenuity to run.

But instead, they choose to single out the sick and vulnerable, shamelessly lie to them and try to scam them out of their dwindling cash.

Bastards.

Anyhoo... back to Danlotab:

I immediately recognized the ingredient list, of course. It is our old friend formula #2, also marketed as Pileen in Pakistan, for the treatment of piles (hemorrhoids), and apparently re-branded by Oslo Health Solutions (for it is they, of course) as a treatment for -not only EDS, but also as a "guaranteed and clinically proven" treatment for Arachnoid cysts, Ascites, Multiple System Atrophy. Chordoma, Chronkite-Canada Syndrome, Teething (really!), Muscular Fasciculation, Horner's Syndrome, Lenox Gastault Syndrome, Megaloblastic Anemia, Myelodysplastic syndromes, Benign Essential Blepharospasm, Pseudotumor Cerebri, Enlarged Tonsils, Spasmodic Torticollis, Benign Essential Tremor, Kugelberg-Welander Disease (i.e. SMA type III), and Wiskott Aldrich Syndrome.

Its unbelievable, isn't it?

I do ask all my EDS friends NOT to buy this product and to spread the word that this is a scam.

...and keep watching this space. Because there is more to come on this topic.

A lot more, unfortunately.

Oslo Health Solutions: Preying On The Sick Part III

I'm kind of sick talking about these people by now, to be honest with you. I have devoted hours and hours of rather nauseating research to Oslo Health Solutions and their claims. There are many, many more hours of work that could be done; -just on the Internet alone, before one starts on private and other channels, but I don't have the resources for it, financially,  physically or spiritually.

But there are two areas I do want to explore:  How people like this might think, because it seems to me,  their thought processes are very different than us trusting honest normal people. Maybe getting into their brains a little will help us to beware of others of their ilk.

And I also want to let you know how you can fight back; against people like this in general and against Oslo Health Solutions (OHS) in particular.  Because let's face it: Oslo Health Solutions run a pretty despicable operation and they need to be stopped.  Now.

So how do they think they can get away with it?  I have thought about this and I think I figured out a few um ....principles for Internet fraud.

1. Lie Big:
   It is a concept con-men have down cold, but one that most decent people can't get their heads around:  If you are going to lie to people: Lie big. Don't bend or massage the truth.  People are expecting that. Most normal people lie small, They exaggerate or use words like "almost" or "virtual".  But the truth is usually somewhere underneath. People expect this and watch out for exaggerations and small lies. People generally don't expect a lie to be totally bald-faced and to have no relation to the truth. Therefore we see the grandiose claims OHS make and we expect there is some truth to them. This is why OHS were so smart in their pitch. They understood this and therefore they sold so high, but delivered so low, they seem to have flown right underneath most radars.  
    
2. Divide and Conquer: 
   People with specific illnesses don't generally go looking for herbal treatments for other illnesses, so if one product was exposed as a fraud, then it is just that one out of ...what?  ...about 60 now that I have found?... I figure OHS simply dump the product that was exposed, find a new disease, re-brand the website and labels as "new disease-Tab" and then carry on selling the exact same product to a different market.
   
   I guess OHS didn't expect anyone to search on more than one or two of the diseases they cover. The must have figured that chances that someone would work out that they are selling  the same list of ingredients as  a completely guaranteed and clinically proven herbal treatment for up to nineteen (19) different conditions, from teething troubles to Multiple System Atrophy (MSA), which is generally fatal within two years of diagnosis (Elizabeth at Screw Bronze! has MSA. Read her blog if you want some graphic descriptions of what it does to one .... and   -Quick! give her some shallots and Red Earth!  That'll be bound to cure her...)
   
   
3. Avoid well-organized groups:
   There is No MS-Tab, no Breast Cancer-Tab, no Autism or Aspie-Tab, no Alzheimer's-Tab and I think there is a very good reason for this. It is probably the same reason Cardio-tab no longer exists:  These conditions are highly public and have well-populated organizations and lots of support groups surrounding them, the jig would be up pretty quickly with most of these conditions. -I was actually surprised to find MD-tab, Leukotab and Parkotab, as they are also quite well organized too.  
    
4. Use the Global Market to confuse your  umm... "customers":
   If you set up shop based out of a small, little understood country in Scandinavia, then ship your product from Pakistan, most normal sick people won't be able to figure out how to take action against you from halfway around the world... 
   
   But keep reading.  I have found a fair bit of information on this.

I have two imaginary scenarios for who could be behind Oslo Health Solutions:  In the first one, it is a couple of teenagers, now young men, who started it as little more than a lark out of someone's bedroom, not fully comprehending the real lives that could be effected behind the illness they researched on-line to create new markets for a Pakistani Hemorrhoid preparation.

It the other scenario, it was started very deliberately by adults who have no regard for others, knew exactly what they were doing and are in this game to make money, not caring at all who gets hurt in the process.

Regardless, it is wrong.

Several people asked me, both in comments and through other channels, if we could inform the FDA about this. I don't think the FDA has any interest, as natural remedies and herbal supplements are not very regulated here in the US. However, they might be interested to investigate if they thought Americans were being sold Strychnine as a supposed cure for Parkinson's disease.   I will look into this.

However, FDA aside (for now), the Norwegian government DOES regulate (and tax!) natural remedies. It falls under the jurisdiction of the Norwegian Medicines Agency, and they have an English version of their website, and of their contacts page (how cool is that?), complete with e-mail addresses, so you can send the links directly. I love Scandinavian efficiency!

Now, I suspect that Oslo Health Solutions are trying to get around some of the European laws and regulations governing sales of herbal remedies as well as false advertising laws by manufacturing and shipping their product from Pakistan. 

However, Pakistan now has the Electronic Transaction Ordinance (2002) which protect consumers in electronic commercial transactions, such as buying poison from Pakistan. More interestingly, there is the 2007 Electronic Crime Ordinance which has this interesting clause, potentially punishable by death:

17. Cyber terrorism. -

a. Any person, group or organization who, with terroristic intent utilizes, accesses or causes to be accessed a computer or computer network or electronic system or electronic device or by any available means, and thereby knowingly engages in or attempts to engage in a terroristic act commits the offence of cyber terrorism.

Explanation1: For the purposes of this section the expression “terroristic intent” means to act with the purpose to alarm, frighten, disrupt, harm, damage, or carry out an act of violence against any segment of the population, the Government or entity associated therewith...."

Do you think that selling Strychnine to Parkinson's patients over the Internet could be interpreted as "Intent to harm, damage or carry an act of violence against a segment of the population..." (what we in America would call a hate crime)?  I think it could be.  

Interesting stuff, eh? 

Now: Of the sites I investigated (and I have to admit that a few, such as Inisitab, and Abdotab were late additions to the party) the vast majority claimed to be run our of Norway, from this address:

Oslo Health Solutions

Oslo Health Solutions
Suite 329
Youngstorget
NO-0028 Olso
Norway

There are a few exceptions, Some had no address whatsoever, but when you click on the "order now" , button, it comes up as Oslo Health Solutions. These included Raynotab, Guillatab, Clearotab,

...and a few products seemed to be run out of the UK, from corporations (...or are they? "Inc" is not a UK corporation suffix  "Ltd" or "plc" are the norm over there.  ...Hmmmm.)  supposedly operating over there.  Note the addresses are all exactly the same.

Vertigo Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Anemia Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Psoriasis Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Vitiligo Tab was the one which had buried its tracks particularly well. No address, no telltale "Oslo Health Solutions" banner on the order form. The Web site was registered to a "Charls Dickens" (sic)  of

Berkeley Square House,
W1J 6BD
London,  W1J 6BD
United Kingdom

In the UK, companies making false claims over the Internet are regulated by  The Trading Standards Institute.  Vitigilo tab is claiming that "Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo" (my emphasis). Psoriasis Tab and Vertigo Tab also claim a "100% cure", whereas Anemia Tab claims a "completely guaranteed and clinically proven herbal treatment for Anemia".  Are these false claims?  I dunno, but I think they should be investigated by the appropriate parties.

So what you do is this: You go to their site and enter the postcode

for the guys against whom you wish to complain, which is KT2 6LX  or W1J 6BD (for Charls Dickens) and you follow the instructions from there.

Little people can fight back, you know. We just need to get the right muscle on our side.

Oslo Health Solutions: Preying On The Sick Part II

This is Part II of my little exploration of a unscrupulous company who takes advantage of sick people by selling them herbal remedies under false pretenses. In part I, I told you about the products sold by Oslo Health Solutions, which is by far the worst offender out there that I have found. In Part II, I am sticking with Oslo Health Solutions, and concentrating on the ingredients they claim are beneficial for a very wide variety of serious ailments. I am uncovering new and interesting information every day, none of it good.

 I promised you an analysis of the formulations that Oslo Health Solutions (OHS) purport to use for the various ailments that they purport to treat.  I performed this exercise a couple of years ago on the Syrotab formulation, what I am now calling "Formulation 1" herein, as it is touted not only for the "guaranteed treatment of Syringomelia" (a condition which cause hideous pain, disablement and eventual death), but as a "guaranteed treatment" for several conditions, including Post-Polio syndrome (potentially crippling), Osteomyelitis (potentially fatal) , Peripheral Neuropathy (often treatable if the underlying cause is located) and Muscular Dystrophy (both crippling AND fatal).  My little analysis at the time was done for fun, and it was amusing-if-a-little-scary then. Looking back and knowing what  I now know, Formulation 1

The main ingredients are listed as

Magnesium Murakab
Zinc Murakab
Berberis aristate
Ext Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

LETS BREAK THIS DOWN, SHALL WE?

Magnesium Murakab, Zinc Murakab
I could not find any information on these specific formulations of magnesium and zinc. So I looked up the work “Murakab”:

It is an Islamic concept meaning “complex ignorance” See the following explanation:

The classical ulama of Islam divided ignorance into two parts; namely; simple (basiit) ignorance and complex (murakab) ignorance. In simple ignorance one knows that one does not know whereas in complex ignorance one does not know that one does not know. Often people who do not have book knowledge, i.e., those who did not have the chance to study at universities are characterized by simple ignorance. This type of ignorance is not as deadly as complex ignorance since one does not have the arrogance and the pride that often accompanies the thought of considering oneself ’educated’.

Hmmm. Something smelled bad. So I kept looking down the ingredients list:

Berberis aristate Ext: OK this is actually something, though misspelled.  It is extract from the plant Berberis Aristata, English name Tree Tumeric, the root of which has antibiotic and anti-inflammatory properties. (To my eyes, They will need all the anti-inflammatory properties they can get to counterbalance that "Murakab" jab.)

Egg Shell Calcium (quoi? I know eggshells won't do any harm if ground up finely, but I don't think the type of calcium found in eggshells is can be absorbed by humans)

Sulphur:  (in what form? and some people are allergic to sulphur -where's the warning?)

Substituted olive Oil: Substituted for what? Or more interestingly; what was substituted for olive oil?

My summary at the time:

Should I ever get the urge to sprinkle my breakfast eggs with tree tumeric, sulphur and complex ignorance, then eat them shells and all, I will let you guys know how I get on. In the meantime,. I think that anyone with Syringomyelia or other conditions should save their money to apply to real medical expenses.

("Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be "possible for us to make such a bold claim")

Formulation 2:

The main ingredients, according to Oslo Health Solutions are:

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

These ingredients, presumably in different combinations (if one is to be kind) are "guaranteed" by OHS to treat the following

Muscular Fasciculation

Kugelberg Welander Syndrome 

Pseudotumor Cerebri

Ascites

Myelodysplastic Syndromes

Teething Troubles (Yes. They say you should give it to babies!)

Spasmodic Torticollis

Enlarged Tonsils

Arachnoid Cysts

Multiple System Atrophy

Ameloblastoma

Wiskott Aldrich Syndrome

Horner's Syndrome

Chordoma

Benign Essential Tremor

Myelodysplastic Syndromes

Benign Essential Blepharospasm

Cronkhite-Canada Syndrome

Megaloblastic Anemia

Really.

So I did a little research on each of these ingredients:

Berberis aristata D.C Ext.: Here again is our friend the Tree turmeric, spelled correctly this time.

Melia Azadirachta Linn Seed: Azadirachata Indica is an evergreen tree native to India and the region. It is used for medicinal purposes: The bark is used for fever, nausea and skin diseases. The leaves are used for skin diseases -but applied topically.

I couldn't figure out what the seed oil (I presume this is what Linn Seed means) is used for specifically.

Raphanus satirus Linn: I think this might actually refer to Raphanus Sativus Linn, which is the Chinese radish. Its seeds are used for natural medicine in diuretics and laxatives and also to help naso-pharyngeal affections and stomach troubles

Melia azadirachta Bark: Bark from the Azadirachata Indica tree as mentioned previously. The bark is used for fever, nausea and skin diseases.

Red Earth: Um. I think as the description suggests, this is earth (dirt) that is red, from India. It is seems to be used in face packs and the like. I don't know why anyone would eat it, but maybe there is a good reason.

Sulphur (purified): Used in Indian homeopathic medicine. I am not sure what for, exactly

Allium ascalonicum seed: Allium ascalonicum is the common shallot. Shallots appear to contain more flavonoids and phenols than other members of the onion family.

While researching these ingredients, I found them listed in the same order, with the same misspellings, on a site that appears to have nothing (publically) to do with Oslo Health Solutions.

Check out the information for Pileen, a natural remedy for hemmorhoids, which is marketed and sold by Ark Corporation (Rawalpindi, Pakistan)

Some text from their site:

PILEEN is an effective herbal remedy for treatment of piles or haemorrhoids. It stops bleeding of haemorrhoids and relieves pain and inflamation. Pileen also removes the constipation, which is one of the main cuases of piles. Pileen is equally effective for both (internal and extrenal) forms of piles.

WHAT IS PILES?
Piles, also known as haemorrhoids, are swollen blood vessels in the back passage. There are two types of piles - internal or external: Internal piles are the most common form of the condition and appear as bright red shiny swellings inside the anal canal, covered in the thin, moist lining of the rectum. External piles are swollen veins close to the anal opening, covered in a layer of skin with a dark red or dusky purple appearance and can resemble bunches of grapes.The main cuases of piles are constipation (for a long period) and use of too much chillies and spices.

To prevent piles :

• Ensure that there is adequate roughage (bran, whole grains, green vegetable, and fruits) in your diet.
• Avoid alcohol, tea, coffee and very spicy food
• Drink at least 8 glasses of water daily preferably non-refrigerated.
• If your life style is sedentary include some exercises in your daily routine.
• Get yourself treated for any condition that is causing you to strain such as chronic cough
• Attend to nature's call daily and do not postpone the urge to defecate, but do not sit for too long in the toilet.
• Maintain god hygiene and keep the anal area dry learn to relax mentally and regularize your life style
• Isabghol husk can be taken as a bulk forming laxative.

DOSAGE:
Two tablets thrice a day with water.

INGREDIENTS:
Berberis Aristata ,Melia Azedarch, Linn Seed, Raphanus Satirus, Red Earth, Purified Sulphur, Allium Ascaionicum Seed.

Just a side-by-side look at the ingredients again: Pileen above, multiple OHS products below

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

Fascinating, huh?

The funniest fact is this:  OSH do sell a product called Hemorotab, but the ingredients are completely different than the hemmorhoid treatment they apparently re-label and sell to treat MSA and other serious health conditions! Mad, eh? Here is the list for Hemorotab (Hemorotab! I ask you?! Sweet mother of God! I couldn't MAKE this stuff up!)

(The main ingredients of Hemorotab tablets are: Nuqra flakes , Ruby triturated, Turquoise, Agate green, Bombyx mori, Elettaria cardamomum, Conucilien, Corallium rubrum, Coral, Sea coconut, Ambra grasea, Aquilaria ovata, Delphinium denudatum, Doronicum hookeri, Lapis lazuli, Myristica indica, Pearls triturated, Vateria indica, zehar mohra, Crocus sativus

Hmmmm ...rather heavy on the precious and semi-precious stones, this one. Who knew hemmorhoids were so status-conscious?)

...but I digress...

On to Formulation 3...

This one is supposedly for the treatment of Idiopathic thrombocytopenic purpura (ITP), which is a bleeding condition in which the blood doesn’t clot as it should due to a low platelet count. OHS's "treatment" for this includes the following.

Ammonium Chloride
Potassium Nitrate
Cinnamomum
Tamala
Rheum Emodi, Wall
Base Q . S

My analysis:

Ammonium Chloride: Salt of Ammonia. Its expectorant action is caused by irritative action on the bronchial mucosa. This causes the production of excess respiratory tract fluid which presumably is easier to cough up. I'm not sure what benefit this woudl have to bleeding or platelets, exactly.

Ammonium salts are an irritant to the gastric mucosa and may induce nausea and vomiting.  (Again, not getting the platelet connection here)

Potassium Nitrate: Salt Peter. A popular misconception was that potassium nitrate caused impotence and it used to be added to food in all-male institutions. This myth has been debunked. However, potassium nitrate and other nitrates do successfully combat high blood pressure and are used medically to relieve angina.  (Fair enough -not that I think ITP causes either of these problems.)  Oh and BTW:   Platelets, anyone?

Cinnamomum Tamala: Indian Bay leaf. It is mostly used as a seasoning, but is reputed to help colic, diarrhoea, and "rheumatism". It is also said to reduce blood sugar.

Rheum Emodi, Wall: Reported to be useful in biliousness, chronic bronchitis, asthma, sore eyes and bruises.(OK! Maybe this one is for the platelets!)

Base Q . S: I could only find references to this as a listed ingredient in some shampoo that is supposed to prevent hair loss...

Formulation 4.

For Peptic Ulcer Disease,  -the thing that struck me -just looking down this list, was that there is a lot of strong, fragrant substances being sold to soothe a peptic ulcer? Logically, that doesn't compute...

Camphor: Camphor is used in several cough preparations such as Vicks and Buckley's as a cough suppressant and topical analgesic

Menthol: Menthol has analgesic properties that are mediated through a selective activation of κ-opioid receptors. Menthol also enhances the efficacy of ibuprofen in topical applications via vasodilation, which reduces skin barrier function

Oleum anisi: Oil of Anise is employed as an aromatic carminative to relieve flatulence. The oil may be administered on sugar or as Spiritus or Elixir Anisi. It is a mild expectorant, and is an ingredient of simple cough lozenges, often in combination with liquorice

Oleum carvi: Caraway Oil is used to impart flavor to medicines, and to correct their nauseating and griping effects

Oleum eucalypti: The oil of eucalyptus (which is chiefly eucalyptol) and eucalyptol, in small doses, are gentle stimulants; in large doses, they occasion irritation of the throat and fauces, with increased flow of saliva; cephalagia, with extreme fatigue; frequency of the pulse; increased temperature; diminution of vascular tension; gastric irritability, and, not unfrequently, diarrhoea, accelerated respiration, the peculiar odor of the oil being exhaled with the breath; and increase of the urinary excretion

Oleum pine: Pine Oil. It is given internally as a disinfectant and expectorant,

Thymol: Thyme extract. Recent medical research on rats concludes that "Thyme extract had relaxing effects on organs possessing β₂-receptors (uterus and trachea). Thymol has GABAergic properties via a mechanism of action similar to the anaesthetic propofol. Though much less potent, thymol may possess abuse potential (Nice!).

Tincture zingiber: Essence of Ginger  used to calm the stomach and also to treat pneumonia, acute and sub-acute dysentery

Formulation 5

This is purportedly for the treatment of Parkinson's Disease, Soft Tissue Sarcomas and Atrial Fibrillation. It was when I started to go through this particular list that I started to feel like I had stepped into the twilight zone. The lady from whom we bought our house had Parkinson's, and I saw a tiny piece of that that did to her. It is a horrible disease (most of the diseases OHS claim to treat are horrible. This seems to be deliberate). To think that these people are selling the list below (read it) as a "completely guaranteed and clinically proven herbal supplement that helps patients overcome the symptoms of Parkinson's Disease" just makes me want to vomit. Apparently, if I took some parkotab, I might do just that! Read on if you have the stomach for it:

Salvia Haematodes: (from a PubMed article) The aqueous extract of the root of Salvia haematodes has been investigated for its pharmacological actions on the cardiovascular and central nervous system. It was found to possess significant cardiotonic and anticonvulsant activities.

Centauria Behan: Centaurea Behen is the correct spelling. A white flower of the knapweed family. Said to be tonic.

Orchis Mascula: The ground-up root (called Salep) is very nutritive, astringent, expectorant and demulcent. It has been used as a diet of special value for children and convalescents,

Delphinium Denudatum: According to an Indian Medical site: "It helps in reducing the inflammation and also helps in relieving pain. It helps in curbing the infection happening in the body and wounds. It is a good nervine tonic and makes the nervous system strong. It improves digestion and normalizes the peristaltic movements in the gut. It stimulates heart for normal functioning and also helps in purifying the infected blood. It checks the respiratory system by expelling out the extra mucus from it. It is a good aphrodisiac agent and also normalizes the menstrual cycle". (I bet the men with Parkinson's will be pleased to have their cycles regulated. Quick! Call Michael J. Fox!)

Myristica Frargrans: Duplicate entry -a mispelling of Myristica Fragrans (i.e. nutmeg) -see below for details

Cinnamonum Cassia: "Chinese cinnamon", a key ingredient in 5 spice seasoning, but has no medical properties that I could find.

Doronicum Pardalia: Thanks to the misspelling of "Doronicum Pardalis" I found this little gem, from our friends at Ark Corporation in Pakistan.

Aren't misspellings fun?!

Doronicum Pardalis: -no such thing. Doronicum is a plant called leopard's bane and Pardalis is a descriptive word meaning well... leopard! (...so that means...what? leopard's leopard's bane? Leopards bane squared? The mind boggles...)

Zingiber Officinale: Common Ginger. It is often used as a natural remedy for stomach upset, motion sickness, and nausea

Asparagus Racemosus: A plant native to India. It is sometimes used to treat dyspepsia.

Paeonia Emodi: The Himalayan Peony. Not only is it purty,

it actually has a significant effect on the Central Nervous System.  Read this.

I don't know if this is necessarily a beneficial effect for Parkinson's sufferers, however...

Serpentine Bezoar:  It sounds like something out of Harry Potter, right? And it almost is. A bezoar is a mass found trapped in the digestive tract of an animal. A hairball is the most common kind (Yum!).

I couldn't find much information about serpetine beozar (outside of references on various OHS sites). I imagine most of the big ones would end up in a serpentine shape (think about it), as opposed to a having been taken from a snake's digestive tract, although maybe that's what they mean. Either way, I am not impressed.

In the middle ages, Beozars were highly prized and considered to be an antidote to any poison; -which theoretically makes it a good thing to put in this particular formulation,  given some of the other ingredients therein (see further down the list). But that myth was debunked in 1575.

Pearl Oster: This may refer to the remains of this woman (at this point, I wouldn't put anything past Oslo Health Solutions!)

...or it could mean "Pearl Oyster". This in turn, could either mean pearl oyster mushrooms, or it could refer to actual ground-up pearls (less likely).

Caryophilus Aromaticus, which are cloves

Kushta Qalee: I can't quite figure this one out. It appears to be some kind of substance popular for male performance improvement, It is used in several such products including  Ejacutab!  (hey look! There's the laughing couple again!)

Stychnos Nuxvomica: Misspelled. This refers to Strychnos Nux-Vomica, which is a product of the Strychnine tree. (Yes, really! Nux Vomica = poision nut!) According to the Internet, It can actually be used to treat flu, fatigue, hangovers, stress, headache and sleeplessness

...and to kill people, of course. Let's not forget that.

Asphaltum: No. This does not refer to ground-up road. Not quite, anyway. Asphaltum does occur naturally and is sold in India as Shilajit (which means destroyer of weakness in Sanskrit -love that!). According to a site I found "it works as a powerful anti oxidant thereby delaying aging. It is an effective remedy in arthritic conditions like rheumatoid arthritis, osteoarthritis, gout and other joint related problems and back pain".

Amber Gris: Ambergris occurs as a biliary secretian of the intetines of the Sperm whale and can be found floating upon the sea, or in the sand near the coast . Ambergris has been mostly known for its use in creating perfume and fragrance much like musk. During the Middle Ages, Europeans used ambergris as a medication for headaches, colds, epilepsy and other ailments

Bambusa Arundinacea: Thorny Bamboo. It is used as an aphrodisiac, diuretic, demulcent, tonic, pectoral, stimulant, and antifertility treatment.

Myristica Fragrans: Nutmeg! (known as Jaiphal in India) Jaiphal is a aromatic, carminative, hallucinogenic, stimulant that is considered effective in digestive disorder, de-hydration & skin disorders.

I wanted to continue this exercise. There are at least 8 other formulations that I have not covered. But honestly, I am feeling quite ill right now. I think If before, anyone might have thought there may be something to the claims of Oslo Health Solutions, the idea of giving whale bile, posion, hairballs and unstudied anti-convulsants to someone with Parkinson's disease will make them think again.

There will be a Part III in this series, because I still have some questions which I think are relevant. However, in the meantime, here is a list of even more Oslo Health Solutions products I have found while researching this piece.

Hernotab, Hemotab, Hemnotab, Hemorotab, Ejacutab, Phyratab, Fibritab

Is there no end? ...

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

Blastotab

Product	Condition	*Formulation #	Price	Duration of supply
Absotab	Skin Abscess	10	$79.99	One month
Amylotab	Cutaneous Amyloidosis.	1	$79.99 (was $290.00)	One month
Anemia Tab	Anemia	Not listed	$89.99	Two month
Archotab	Arachnoid Cysts	2	$79.99	Two month
Ascotab	Ascites	2	$79.99	Two month
Atrophtab	Multiple System Atrophy	2	$79.99	Two month
Ameloblastoma	2	$79.99	Two month
Chordotab	Chordoma	2	$79.99	Two month
Clearotab	Dark Circles and Bags Under Eyes	1	$79.99	One month
Cronkatab	Cronkhite-Canada Syndrome	2	$79.99	Two month
dentotab	Teething!	2	$79.99	Two month
Emphotab	Emphysema	6	$79.99	Two month
Fascitab	Muscular Fasciculation	2	$79.99	Two month
Guillatab	Guillain-Barre Syndrome	1	$79.99	One month
Hornotab	Horner's Syndrome	2	$79.99	Two month
Lennotab	Lenox Gastaut Syndrome	2	$79.99	Two month
Leukotab	Leukemia	13	$79.99	One month
MD Tab	Muscular Dystrophy	1	$79.99	One month
meglatab	Megaloblastic Anemia	2	$79.99	Two month
MG Tab	Myasthenia Gravis.	8	$59.99	Two month
Myeloditab	Myelodysplastic Syndromes	2	$79.99	Two month
Osteotab	osteomyelitis	1	$180	Two month
Parkotab	Parkinson's disease	5	$79.99	Two month
Peniatab	Idiopathic Thrombocytopenic Purpura	3	$160.00	Two month
peptotab	Peptic Ulcer Disease	4	$180.00	Two month
Periotab	Periodontitis	10	$160.00	One month
Peritab	Peripheral Neuropathy.	1	$180	Two Months
Picknotab	Pick's Disease	11	$230.00	One month
pp-tab	Post-polio syndrome	1	$79.99	One month
prismatab	Benign Essential Blepharospasm	2	$79.99	Two month
Pseudotab	Pseudotumor Cerebri	2	$79.99	Two month
Psoriasis tab	Psoriasis	Not listed	$139.99	Six week
Ptosotab	Ptosis of Eyelid	9	$79.99	One month
Raynotab	Raynaud's Disease	1	$79.99	One month
Sarcotab	Soft Tissue Sarcomas	5	$79.99	One month
Sclerotab	Scleroderma	1	$79.99	One month
Sightotab	Age-related Macular Degeneration	9	$79.99	One month
Syrotab	Syringomyelia	1	Now $79.95 (was $230.00)	One month
Thyrotab	Thyroid Nodules	7	$79.99	Two month
Ticknotab	Tick Bite (?)	12	$190.00	Two month
Tonsotab	Enlarged Tonsils	2	$79.99	Two month
Tortitab	Spasmodic Torticollis	2	$79.99	Two month
Trematab	Benign Essential Tremor	2	$79.99	Two month
Vertigo Tab	Vertigo	Not Listed	$49.00	One Month
Vitiligo Tab	Vitiligo	Not Listed
welnatab	Kugelberg-Welander disease (SMA Type III)	2	$79.99	Two month
Wiskotab	Wiskott Aldrich Syndrome	2	$79.99	Two month

*I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

Limbrel Update (Limbrel Part III)

I should start with the good news first:  My hands have been hurting less recently I have been seizing less. My foot has been less numb, my right leg giving out less, and I have been walking more steadily.

Hands aside, I don't think I have Limbrel to thank for this. Limbrel is not supposed to impact the neurological system. I think the more logical explanation is that I was granted some kids of temporary reprieve, which points (again) to an auto-immune condition such as MS or Lupus, rather than Limbrel as a miracle frug.

So I jumped on the scale this morning. OK I stepped on the scale. It is made of glass, so jumping -even if I felt up to that first thing in the morning -or ever (and I never do) is ill advised. The last number was 5. Actually it was 5.5. So I have gained 9½ lbs. That's the same as 10 lbs as far as I'm concerned.

Ten pounds in a MONTH!  And I'm only 5'3"!  That is a big deal. And not in a good way.

My first thought when I saw that number on the scale... -actually, it was my second thought (my first thought was unprintable -even for me) was how many calories are in these pills???? It was a kneejerk reaction -almost a joke. But then I realized it is a valid question. As I mentioned before,  Limbrel is not a drug. It is technically a medical food product. Well, the FDA has rules about food labelling and nutrition information, right?  So if Limbrel is a food, not a drug, things like calories and percentage daily values should be available, right?  Hmmmm. 

So I had a little look in my favorite place: The Internet.

I found Limbrel's official stance on the subject: It is regulated under the Orphan Drug Act (still love that name!) Amendment 1988, later incorporated into the Nutrition Information Regulation Volume 21 101.9(j)(8)(i)-(v).

That took a little digging, but I found it.

CFR 101.9 basically deals with all that nutrition labeling stuff, you know, the little grids we see on practically everything except lettuce and dog food these days?

which is what I expected.  But Limbrel wiggled out.  Here is the verbiage:

(8) Medical foods as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee(b)(3)). A medical food is a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation. A food is subject to this exemption only if:

(i) It is a specially formulated and processed product (as opposed to a naturally occurring foodstuff used in its natural state) for the partial or exclusive feeding of a patient by means of oral intake or enteral feeding by tube;

(ii) It is intended for the dietary management of a patient who, because of therapeutic or chronic medical needs, has limited or impaired capacity to ingest, digest, absorb, or metabolize ordinary foodstuffs or certain nutrients, or who has other special medically determined nutrient requirements, the dietary management of which cannot be achieved by the modification of the normal diet alone;

(iii) It provides nutritional support specifically modified for the management of the unique nutrient needs that result from the specific disease or condition, as determined by medical evaluation;

(iv) It is intended to be used under medical supervision; and

(v) It is intended only for a patient receiving active and ongoing medical supervision wherein the patient requires medical care on a recurring basis for, among other things, instructions on the use of the medical food.

And that's all very well and good, but here I am gaining ten pounds in a month with no logical reason why. OK I am craving noms like a lolcat on weed, but I totally blame the Limbrel for that. I looked up weight gain as a side effect for Limbrel, and they claim there is none. I Googled 'Limbrel weight gain' and guess where I ended up?  Yes. Back here on OSM. *Sigh.* Limbrel is a very new frug, so not much out there on it yet except the official blurb, so I drew a blank.

Sometimes being a pioneer is bad.

There was a theory that maybe the weight gain was new muscle, but I don't think this is the case. I don't have that many muscles around my midriff, which is where I am gaining most of the weight (unusual for me). It's not muscle. I can feel myself getting fatter. I can feel the difference in my body as I wash or turn in bed.  I am not happy with this. 

And I am not sure what to do? I have been eating more carbs for many months now. In fact, I have been eating mostly carbs. I had already gained some weight using this strategy, but at nothing like the rate of the last month.  High-carb seems to help with the seizures. So I was OK with a little weight gain if it meant a life somewhat closer to normal.

But I cannot keep gaining at this rate. I am out of clothes for one thing. And I hate being this big for another. As I am exercise intolerant, the only thing which works for me is an Atkins-type plan. however eating Atkins makes me very very tired -although if I keep very strictly to it, I will seize less.

I guess I am going to cozy up (again) with my much-thumbed copy of the Atkins book -for now.

I will keep you guys updated.

Limbrel Review Part II

I am still taking the "frug" Limbrel. It's been just over a week now, and I am happy to report that the worst of the stomach issues seem to have passed (OK that was a bad joke). I am still more heartburny and stomach-upsetty than normally, but  -happily for my family-  the toxic flatulence has relented for the most part. The remaining residuals I can blame on the dog, who is usually the most frequent offender in that regard. It helps that he habitually parks himself right beside me, anyway. Hey, if opportunity presents itself, who am I to turn it down?

I have noticed no improvement in my arthritis whatsoever.

But here's a funny thing:  I bent to pick something up off the floor the other day.  As I have Ehlers-Danlos Syndrome, I am um.. "limber". I pick stuff up and tie my shoes by bending at the waist and keeping my knees straight or locked (yes. there is a difference: "Locked" in my case is a ways past straight). I don't even think about it, it's just what I do and have done just about forever. I get funny looks when I tie my shoe in public.

Well, I bent to pick something up off the floor the other day and felt a funny sensation in the back of my right knee:  A an unfamiliar tightness, which took me by surprise. I thought little of it at first -thought maybe I had slept funny- but it has continued for some days, In fact, it has now spread to the left leg, too. 

Now, when I at the waist bend to put my palms flat on the floor... Well, I can still do it, but I feel that pull in the back of my legs that was not there before. Is this the Limbrel?  I don't know. I can't think what else has changed.

Another thing that has changed, which I am NOT happy about: I have suddenly gained some weight.  My weight usually fluctuates about 4 lbs from day-to-day or week-to week, depending (I assume) on whether my body is choosing to hold or flush water and sodium.  However it does so within a range, and if it stays in that range I don't worry too much about it. Usually  it stays in the 6-9 lb range when looking at the last number on the scale. Now those numbers have changed and the range is from 9-2, which means the middle number is also changing more often than not. I am so NOT happy about that. Again, -although it has been a holiday, and I did eat a little more than usual, I don't think it was enough to cause that much weight gain.  I think I have Limbrel to thank for at least three of those four pounds.

I am seriously tempted to throw in the towel on this Limbrel business, but it is too early yet, so I will persevere. 

I will keep you guys posted. 

Frug: A Limbrel Review, Part I

I mentioned that I have started taking Limbrel for the arthritis in my hands.  Limbrel is officially approved for the treatment of osteoarthritis, However, we are not sure if this is the type of arthritis I actually have (me being me: test results indicate little wrong, but clinical presentation and pain say otherwise). I think my poor rheumy is desperate at this point, because my hands are getting worse, and nothing that has helped has been tolerated by my body (which appears to be the story of my life).

Limbrel is a new product. Not many people are taking it yet. So I thought I would write a little review here and document my progress on OSM for those of you who might be interested.

But before I do that, I am  going to explore Limbrel itself, how it came about, and why is it classified and marketed the way it is.

Limbrel is an interesting product. It is not considered a drug. It may sound like a drug; -with a generic name (flavocoxid) and everything. It may look like a drug (see picture of druggy looking product and packaging).  It is only available by prescription here in the USA. However, It is actually is classified -not as a drug- but as a "medical food product".

What the fuck does that mean? I hear you ask?  Indeed, I said it to meself. So I tried to find out.

According to the FDA, as defined in in section 5(b) of the Orphan Drug act (Orphan drugs! This is getting better already! Are they drugs without parents or drugs for kids without parents?  I have no parents, so I probably qualify either way...  but I digress...) a medical food product is:

a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.

Huh?

So by these guidelines, shouldn't Ensure be a medical food? Or the ketogenic diet? -or a lowfat diet, for that matter?  Indeed,  all food -if you think about it, is to manage a specific medical condition called malnutrition.  Naturally, some works better than others in achieving this end (resulting in many morbidly nourished people in this country -but that's a whole 'nother post!).

Where is the line between "food" and "medical food"? Indeed, where is the line between "medical food" and "nutritional supplement"? Because although Limbrel  looks like a drug, the descriptions sound more like a nutritional supplement to me. See for yourself. This is an excerpt taken from the official site:

Limbrel contains flavocoxid, a proprietary blend of natural ingredients from phytochemical food source materials. Flavocoxid is comprised primarily of the flavonoids such as baicalin and catechin. These or similar ingredients can be found in common foods such as soy, peanuts, cauliflower, kale, apples, apricots, cocoa and green tea. The fact that these and similar ingredients have been widely researched and used in medicinal products in other countries also supports biacalin and catechin’s safety and effectiveness. Limbrel provides levels of these flavonoids needed to meet the distinctive nutritional requirements of people with osteoarthritis and cannot be obtained through simply changing the diet.

Hmmm.  So it is a food and not a drug because it is a naturally occurring product which is extracted from plants.  Ah! OK then.

But hang on a minute: Morphine is extracted from the dried milky exudate of the unripe seed capsule of the opium poppy (Papaver somniferum). (-I found that definition on a web site, BTW. OSM has pretty good English, but "exudate" is not a word I use daily. Nor is "somniferum" -but I kind of like it!).  So Morphine is a natural plant extract, too. Why then is Morphine, which is a natural plant extract, classified as a Schedule II narcotic drug, and Limbrel, which is also a natural plant extract, classified as a medical food?  Indeed, why is St. John's Wort, which is also a natural plant extract, and only available by prescription in Ireland, classified as a "nutritional supplement" (i.e even lower on the totem pole than "medical food" ) and available over-the-counter here n the US? 

It's all quite confusing, really.

OK. Let's get the simple explanation out of the way first: One keyword is "narcotic"  Morphine is narcotic, which according to Dictionary.net means:

A drug which, in medicinal doses, generally allays morbid susceptibility, relieves pain, and produces sleep; but which, in poisonous doses, produces stupor, coma, or convulsions, and, when given in sufficient quantity, causes death.

Death is not a good side effect. Nor is addiction, which is the other big thing with narcotics. I can understand why morphine would be regulated so closely. You can't really sell it in the vitamin aisle.

So taking this same logic: Is Limbrel a food, not a drug because it is not addictive and cannot be overdosed on? So if I happened to down me entire bottle of Limbrel in a single sitting, does this mean I wouldn't get seriously ill or die?  This is not a theory I intend to ever test, BTW; -especially given the side effects I have experienced on just the regular dose (more on this later), but I am thinking out loud here.

And what about St. John's wort (SJW)?  That is available on the supermarket shelf and you can overdose on that. An overdose can cause Seratonin Syndrome, which is dangerous.

Symptoms of serotonin syndrome include:

 

• Confusion
• Seeing or hearing things that are not really there (hallucinations)
• A fast heartbeat (tachycardia)
• Feeling faint
• Fever
• Sweating
• Muscle spasms
• Difficulty walking
• Diarrhea.
   

In one reported case, an overdose of St. John's wort caused seizures.

But SJW is not regulated as heavily as Limbrel is. SJW is not classified as a "medical food" but as a nutritional supplement, and is therefore available in me local supermarket, parading merrily on a shelf my kids can easily reach.

Hello, FDA?  Here is a new word for you: Consistency.

I am still curious why Limbrel walks like a drug and talks like a drug but is not a drug?  I did a little patent search: Limbrel has two so far; this one  and this one  and a couple pending.  I suspect the answer is the simplest one:

Money.

If you control the patent and the product, -especially with the backing of the FDA, you become the sole and defacto supplier for 50 years.  It's a really clever move.  If Limbrel was simply marketed as a nutritional supplement, it would lose a lot of cachet -AND it would mean open season for competitors.  Getting classified as it has been was pure genius. Not only for the patent and FDA protection, but because most consumers think "prescription" means "better".

Limbrel was developed by Primus Pharmaceuticals, a private company run by a bunch of late-middle-age-to-mature white guys. As it is private, I can't get hold of their financial reports, which is a shame. I was pretty curious about some of their activities. I am particularly interested to see how they managed to make a common substance found in everyday food into a prescription product.  I strongly suspect their real genius lies in management, marketing  and lobbying, not in science.   I could be wrong, of course. OSM is rather known for her cynicism.

I tried to find some evidence to back me suspicions, thinking I would unearth a huge amount of political contributions, but I only found a few campaign contributions by JD Weir, who is the Head Honcho  there (although I'm sure that's not what it says on his business cards) to support some local right-wing republicans. No big surprise there.  I'm sure the real money was hidden behind some ostensibly independent lobbying group.

I'll have to dig a little deeper.

You know the biggest irony is the amount of time this piece has taken me to write. There is a simple reason for this. My hands are KILLING me at the moment. I have had to take many breaks, and slather on the Voltaren gel. The irony of this is not lost on me. I aggravate the inflammation by writing about Limbrel, so I need Limbrel to combat the inflammation.

It's messed up.

As to how I am doing with Limbrel? Well,  It is early days yet -not even a week. As it is not a drug, I was told not to expect results immediately. I have mainly had side-effects so far: upset stomach and noxious flatulance that could clear the mall in record time. I was told this is my body being "cleansed of toxins" I don't know if I buy that or not, but I am giving it more time, but not much. If the toxins aren't out soon. Himself will leave me and the children and animals will go with him. 

BTW my new name for Limbrel the half-food/half-drug is this:

Frug.

It sounds filthy, doesn't it? Time will tell if it is.

More From the Floor

I knew I was in trouble when I got lost on the way there.  I had no excuse for getting lost. This rheumatologist has been my doctor for a couple of years. Not only that, but her office is in an area I know well; on the same street as The Chiari Institute, the radiologist, Filene's basement and my cardiologist.  I still managed to get lost and I was 15 minutes late. Things went downhill from there.

Backtrack a little: I thought I had discovered a breakfast I could eat. This breakfast worked all last week, when I was ferrying a friend's kid to and from school in the morning (long story). So I ate my new "magic  breakfast" yesterday on the way to the rheumy's office. Eating breakfast was my mistake. Actually, assuming this week would be the same as last was probably my real mistake.

I ate breakfast and got lost!  I guess confusion is the first symptom of my fits. I always thought it was visual disturbances, but the confusion definitely started first.  I suppose the other times that I was confused, I didn't know I was confused (being confused and all). I guess it is hard to know these things without another person present, however, to get lost en route to somewhere familiar is pretty definitive.

While I was in the waiting room, the usual "other" seizure aura stuff started in force. I knew I was going to seize and there was nothing I could do about it. I just hoped I would get to an examination room before it happened. I didn't want to freak out the other patients -they already look askance at my obvious lack of stiffness  (Once a man told me I had no right to be there because I could walk fluidly. I put my foot on top of my head and said "too flexible can be just as bad as not flexible enough". He shut up). My wish was granted. The attack held off until I got to a room. I had a pretty big fit on the floor of the examination room almost as soon as the rheumy walked in the door.  The poor woman was at a loss what to so. Seizures aren't her thing. I could hear the distress in her voice as she tried to calm me (and in-between convulsions, I am reassuring her. "It's OK. I'm used to this"). 

After I had stopped conulsing, most of the actual appointment was conducted with me sitting on the floor -just in case another one hit (two more did) and the doc sitting on a chair.  She was wearign cute shoes. 

I need to backtrack again for a bit here:  Dr Curious had suggested I get some testing done for dysautonomia. There is a specialty lab in NYC which does this testing, but you need a referral. I didn't even bother with my PCP. He is a nice man, but terrified of "my" stuff and I knew he would just tell me to speak to #25. So I spoke to #25. He suggested I try contact a different hospitap altogether.   I asked him if he would would write the referral? Sure he would!  I just had to tell him where I wanted to go and what to write.  (quoi?)

So then I went to me cardiologist. He suggested I see a nephrologist and suggested yet ANOTHER center. He also suggested the rheumatologist might know something.  It so happened that between cardiologist and rheumatologist visits, the kids had their visit with their rheumatologist a couple of weeks ago, I asked her if she had any suggestions or ideas. She didn't but she would ask someone. Call her in a week. I did and she has not returned my call. Big surprise.

So all this came flooding out while I sat on the floor of the rheumatologist's examination room. I told her I was at my wit's end and didn't know what to do.  She picked up the phone, called someone, and in about three minutes, she had the number for the dysautonomia lab, as well as a number for a new neurologist (don't know if I will see him or not) and a prescription for dysautonomia testing. -Boom.

I think I mentioned before that I love my rheumatologist.

She finally got to actually examine me and my hands, which are getting worse, BTW -about 40 minutes into the appointment.

I am trying a new product Limbrel which is a "medical food product" not a drug, but only available by prescription. There is a whole 'nother post therein, I suspect, but not today.  Today I have been too busy trying to pry my tilt-table records from the cardiologist's possessive receptionist.

A Lonely Place

I got a call from the Endocrinologist today. My cortisol and ACTH are normal. I don't have Addison's disease. So I asked him what do I have?  What are the next steps towards a final answer?  He couldn't tell me. He seemed to think it was OK to just say I have virtually no aldosterone, treat it with Florinef  and leave it at that. And when I mentioned the heart thing, he advised me to eat more fresh fruit and vegetables "because Florinef can lower potassium".  Yes. I had noticed...

But I still want to know why I have no aldosterone?  Is there an underlying disease process?  And if so, it is hereditary?  And who else deals with this condition and how they handle it?  Because I have to tell you: I am having difficulty managing this condition right now. The tolerances between underdosing and overdosing seem to be very tight. And there is a lot of margin for other stuff to go wrong. The Potassium thing I know about (but I don't know the early warning signs), but what else is there?

I have searched the Internet trying to find others like me, to no avail. I found some Addison's support groups. But most of those guys are not taking Florinef or are doing so in very low doses. Most of them are dealing with the effects of low cortisol, and the aldosterone seems to be almost an incidental problem; indeed, incidentally treated with Cortef.

It's not that I am doing nothing about this.  I found an endocrinologist nearer to home, one who specializes in Adrenal disorders (my current endo is very good, but is diabetes specialist and quite far away). So I will get a second opinion on the aldosterone thing.

And my rheumtologist called yesterday morning. She had gotten the report from the cardiologist (that was fast) and she was checking up to make sure I was going to schedule the follow-up test (I am). I mentioned the aldo. thing to her, and she was very pleased that we are getting close to answers at last.  She has been one of my staunchest supporters through all of this. She never suggested that my issues might be psychological. Although she couldn't always directly help, she did what she could and made suggestions. And she submitted all paperwork for disability and other claims promptly.

So although I feel a little lonely, I know I am alone -and more importantly- not without support. That  means a lot.  

The Sickest Loser?

I happened to catch a re-run of "The Biggest Loser" today. You know,  the show where a bunch of obese people go to a ranch for a few months and once there; they sweat, shrink and plot before our eyes until only one skinny person is left?  Well, the disclaimer at the end said something like all contestants undertook this diet and exercise regimen under supervision and with their medical needs needs taken into account  I'm paraphrasing, but it was something along those lines.

And that got me thinking.

Wouldn't it be nice to have the same support for sick people who want to lose weight or get/stay in shape?  Wouldn't it be lovely to have a nutritionist on hand for those of us who have special nutritional needs; say like absorption issues, diabetes, celiac, chemical sensitivities or food allergies?  I don't just mean for a 30 minute visit where she pulls plastic portions samples out of a drawer and doesn't listen when you say you eat less than that, but someone who actually listens and sees to be on-hand several times a week.

This woudl be good for people who are newly diagnosed and starting treatment: People recovering from Cushings, Addison's, Diabetes, thyroid disease of all types and virtually any hormonal issue will need specialized nutrition and exercise support. This is something obvious and yet not covered by doctors or usually insurance. And yet, failure to address these needs can cause almost as much problems as the initial problem, so it would be in the best interest of th insurance companies to support this (but when did insurance companies ever listen to a sick mother?).

And in addition to the dietary stuff: Some (most) of us sick people need specialized help on the fitness/exercise front, too.  How about stability and strengthening for the EDS-ers, weight loss for people with mobility issues, resistance training for the wheelchair user and maybe some conditioning for the chronically ill?

Although I am not hugely overweight (I certainly wouldn't qualify for that show),  I would like to lose a few pounds. And I have tried.  Unfortunately for me -and although I think I am rather an extreme case, I am certainly not alone;  my most recent attempt at fitness training,  which was 10 minutes on the elliptical trainer almost killed me by depleting one of me electrolytes. I also have issues with nutrition (low C, B12, folic acid, D, calcium, carnatine), diet (hypoglycemia), and certain types of exercise will cause me to have a seizure.  Add to this that I have physical limitations with EDS and Syringomyelia and I could keep a whole team of nutritionists, doctors and therapists occupied for several weeks even trying to come up with a viable plan.

But that doesn't mean that I don't deserve one or couldn't use one. And thinking about it, probably the only way someone like me could get that kind of support would be to have the backing of an expensive TV production.

So what about it, NBC? I am not volunteering for "The Sickest Loser" but I would certainly watch and try and pick up some pointers.