False Labeling of Supplements: I... - Cure Parkinson's

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False Labeling of Supplements

Alock2020 profile image

I suggested to my neurologist that instead of taking Gabapentin and Quetiapine for anxiety, that I try various supplements (such as Ashwagandha, Chamomile Extract, Hops, Lavender, Rhodiola, etc.) instead, since there may be short- and long-term side effects from taking the two drugs.

She said that supplements are not regulated in the U.S., that the supplements industry is rife with fraud, that many of the pills contain very small amounts of what the labels claim that they contain, and that they often contain other substances which are either ineffective or even harmful.

Any opinions on this?

30 Replies

Medical doctors are propagandized to believe that prescription medications can do no harm and supplements can do no good. Unfortunately many of them buy into it. I am a subscriber to Consumer Lab which tests supplements. The vast majority of supplements have exactly what they say they have. The places were fraud is rife are from the fly-by-night suppliers for diet, muscle building, and sexual enhancement pills. Another place I have found fraud is rife is essential oils, unfortunately. Vitamins and other substances from major suppliers are trustworthy.

Edit - also, FDA does regulate supplements. See my comment below.

KERRINGTON profile image
KERRINGTON in reply to park_bear

Labdoor is another decent one.

My opinion is that your doctor gave you good advice.

Condor13 profile image
Condor13 in reply to Levod

Depends if you want advice from Medical professionals or medical amateurs.

Try Lithium Orotate. I gave it to my mother who is PwP for years. 5mg of Li element (from 125-130mg of Lithium Orotate) are sufficient and no detectable in the blood test, unlike Lithium Carbonate or Citrate. Before she took it she was agitated and depressed and now she is in good mental health.

I have foind that LO does the same for me, much more relaxed and calm.

Neither Gabapentin nor Quetiapine are exactly good for anxiety, they are both one of those dangerous antipsychotics perhaps to use only upon failure of just about everything else, in a case of significant intractable anxiety, not just your "run of the mill" anxiety, even if chronic. They both work against dopamine and really you should look it up and research it all by your own self on the internet before venturing into that land.

Kind of like taking a surgical grade scalpel to trim a nail cuticle. One tiny little slip and...

In addition if I recall gabapentin was more of an anti-spasmodic, to control and prevent siezures, and for idiopathic nerve pain from various neuropathies...like when you feel like your literal "wires are being fried, frazzled, electrified," "shocky".

On the other hand, there may be much that you are not telling us and are leaving out.

For anxiety there are many reasonable supplements, as well as better prescription alternatives than antipsychotics...excepting of course the general problem with supplements in that there are no regulations and no enforcement as to quality, truth in labels, freedom from adulteration, or any real reliable assurances as to safety and effectiveness.

park_bear profile image
park_bear in reply to MarionP

FDA does regulate supplements. From the FDA website:

fda.gov/food/dietary-supple...

• " Manufacturers and distributors of dietary supplements and dietary ingredients are prohibited from marketing products that are adulterated or misbranded. That means that these firms are responsible for evaluating the safety and labeling of their products before marketing to ensure that they meet all the requirements of DSHEA and FDA regulations.

• FDA is responsible for taking action against any adulterated or misbranded dietary supplement product after it reaches the market."

Good morning ~ an intensive care nurse told me that doctors get a kickback at the end of the year from pharm companies for the amount of prescriptions they write. Made sense: I went to my doctor to get a referral to PT for stress knots in my neck. He refused. Would only write me a prescription for ibuprofen, which I had in my cabinet! At the next open enrollment, I switched Drs snd my plan

That’s one reason they only prefer pharmaceuticals. The other reason comes from my 2 Dr brother in laws: in Med School, they have, maybe, 1 2-hour class on nutrition

They just are not informed

sharoncrayn profile image
sharoncrayn in reply to GrandNan

Some do; many don't. Doctors are not created equal.

GrandNan profile image
GrandNan in reply to sharoncrayn

Good morning 🌞 yes, my statement was too broad. My Dr is “integrative:” he practices both, and prefers high quality supplements whenever possible. The search was lengthy to find him. There are some.

And I would add: it is true. Nutritional supplements are not regulated. The inexpensive brands, like the big box stores or brands from pharmacies, are not good. I would recommend as above: join consumer reports that test & report.

Your neurologist is protecting her business model. You don't need her help to heal yourself.

SE

ssrs profile image
ssrs in reply to SilentEchoes

Amen!!

I think that you should ask her for recent proof of her claims regarding the supplements you inquired about. If she can't provide it, then I think you will have the answer you are looking for.

Here are the side effects for Gabapentin, one of the drugs she would like to give you and keep in mind that the reason you wanted help was for anxiety, which is a known side effect of Gabapentin ! Next ask her about withdrawal symptoms from Quetiapine .

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

drugs.com/sfx/gabapentin-si...

Side effects requiring immediate medical attention

Along with its needed effects, gabapentin may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking gabapentin:

More common

Clumsiness or unsteadiness

continuous, uncontrolled, back-and-forth, or rolling eye movements

More common in children

Aggressive behavior or other behavior problems

>>>>>>Anxiety<<<<<<

concentration problems and change in school performance

crying

depression

false sense of well-being

hyperactivity or increase in body movements

rapidly changing moods

reacting too quickly, too emotional, or overreacting

restlessness

suspiciousness or distrust

Less common

Black, tarry stools

chest pain

chills

cough

depression, irritability, or other mood or mental changes

fever

loss of memory

pain or swelling in the arms or legs

painful or difficult urination

sore throat

sores, ulcers, or white spots on the lips or in the mouth

swollen glands

unusual bleeding or bruising

unusual tiredness or weakness

Incidence not known

Abdominal or stomach pain

blistering, peeling, or loosening of the skin

clay-colored stools

coma

confusion

convulsions

dark urine

decreased urine output

diarrhea

difficult or troubled breathing

dizziness

fast or irregular heartbeat

headache

increased thirst

irregular, fast or slow, or shallow breathing

itching or skin rash

joint pain

large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs

loss of appetite

muscle ache or pain

nausea

pale or blue lips, fingernails, or skin

red skin lesions, often with a purple center

red, irritated eyes

unpleasant breath odor

vomiting of blood

yellow eyes or skin

Side effects not requiring immediate medical attention

Some side effects of gabapentin may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects.

Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

Blurred vision

cold or flu-like symptoms

delusions

dementia

hoarseness

lack or loss of strength

lower back or side pain

swelling of the hands, feet, or lower legs

trembling or shaking

Less common or rare

Accidental injury

appetite increased

back pain

bloated or full feeling

body aches or pain

burning, dry, or itching eyes

change in vision

change in walking and balance

clumsiness or unsteadiness

congestion

constipation

cough producing mucus

decrease in sexual desire or ability

dryness of the mouth or throat

earache

excess air or gas in the stomach or intestines

excessive tearing

eye discharge

feeling faint, dizzy, or lightheadedness

feeling of warmth or heat

flushed, dry skin

flushing or redness of the skin, especially on the face and neck

frequent urination

fruit-like breath odor

impaired vision

incoordination

increased hunger

increased sensitivity to pain

increased sensitivity to touch

increased thirst

indigestion

noise in the ears

pain, redness, rash, swelling, or bleeding where the skin is rubbed off

passing gas

redness or swelling in the ear

redness, pain, swelling of the eye, eyelid, or inner lining of the eyelid

runny nose

sneezing

sweating

tender, swollen glands in the neck

tightness in the chest

tingling in the hands and feet

trouble sleeping

trouble swallowing

trouble thinking

twitching

unexplained weight loss

voice changes

vomiting

weakness or loss of strength

weight gain

For Healthcare Professionals

Applies to gabapentin: compounding powder, oral capsule, oral solution, oral tablet, oral tablet extended release

General

The most common adverse reactions associated with the use of this drug were dizziness, somnolence, and peripheral edema.[Ref]

Nervous system

Very common (10% or more): Somnolence (21%), dizziness (17%), ataxia (13%)

Common (1% to 10%): Abnormal gait, incoordination, neuralgia, tremor, dysarthria, hyperkinesia, seizures, dysarthria, paresthesia, hypesthesia, coordination abnormal, increased/decreased/absent reflexes, vertigo

Uncommon (less than 1%): Hypokinesia

Rare (less than 0.1%): Movement disorders (e.g., choreoathetosis, dyskinesia, dystonia), loss of consciousness

Frequency not reported: Withdrawal precipitated seizure/status epilepticus

Postmarketing reports: Movement disorder[Ref]

Respiratory

Reports of life-threatening or fatal respiratory depression have been reported in patients taking this drug with CNS depressants including opioids, or in the setting of underlying respiratory impairment.[Ref]

Common (1% to 10%): Pharyngitis, dyspnea, cough, bronchitis, respiratory infection, rhinitis

Rare (less than 0.1%): Pulmonary thrombosis, pulmonary embolism

Frequency not reported: Pseudo-croup, hoarseness

Postmarketing reports: Respiratory depression[Ref]

Hypersensitivity

Very rare (less than 0.01%): Hypersensitivity syndrome, a systemic reaction with a variable presentation that can include fever, rash, hepatitis, lymphadenopathy, eosinophilia, and sometimes other signs and symptoms

Frequency not reported: Anaphylaxis, angioedema[Ref]

Psychiatric

There are postmarketing reports of withdrawal symptoms shortly after discontinuing this drug. The most frequently reported reactions with abrupt discontinuation have included anxiety, insomnia, nausea, pain, and sweating. Discontinuation at higher than recommended doses have been associated with agitation, disorientation and confusion. These symptoms have resolved after restarting this drug. The dependence potential of gabapentin has not been evaluated in human studies.[Ref]

Common (1% to 10%): Abnormal thinking, amnesia, depression, hostility, confusion, emotional lability, anxiety, nervousness, insomnia

Uncommon (0.1% to 1%): Mental impairment

Rare (less than 0.1%): Hallucinations

Frequency not reported: Suicidal behavior and ideation, hypomania

Postmarketing reports: Agitation, withdrawal symptoms[Ref]

Immunologic

Frequency not reported: Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS)[Ref]

Dermatologic

Common (1% to 10%): Abrasion, facial edema, purpura, rash, pruritus, acne

Uncommon (0.1% to 1%): Alopecia, eczema, dry skin, increased sweating, urticaria, hirsutism, seborrhea, cyst, herpes simplex

Rare (less than 0.1%): Stevens-Johnson syndrome, angioedema, erythema multiforme, drug rash (with eosinophilia and systemic symptoms), herpes zoster, skin discolor, skin papules, photosensitive reaction, psoriasis, desquamation, maceration, skin nodules, subcutaneous nodule, melanosis, skin necrosis, local swelling

Frequency not reported: Bullous pemphigoid[Ref]

Cardiovascular

Common (1% to 10%): Peripheral edema, vasodilation, dizziness, somnolence

Rare (less than 0.1%): Atrial fibrillation, heart failure, myocardial infarction, cerebrovascular accident, ventricular extrasystoles, bradycardia, premature atrial contraction, pericardial rub, heart block, pericardial effusion, pericarditis

Postmarketing reports: Cardiac arrest, chest pain, palpitation, tachycardia[Ref]

Endocrine

Rare (less than 0.1%): Hyperthyroid, hypothyroid, goiter, hypoestrogenism, ovarian failure, epididymitis, cushingoid appearance

Postmarketing reports: Breast enlargement, breast hypertrophy, gynecomastia[Ref]

Gastrointestinal

Common (1% to 10%): Diarrhea, dry mouth or throat, constipation, nausea, vomiting, dyspepsia, dental abnormalities, gingivitis, abdominal pain, flatulence

Uncommon (0.1% to 1%): Glossitis, gum hemorrhage, thirst, stomatitis, increased salivation, gastroenteritis, hemorrhoids, bloody stools, fecal incontinence

Rare (less than 0.1%): Pancreatitis, dysphagia, eructation, pancreatitis, peptic ulcer, colitis, blisters in mouth, tooth discoloration, perlèche, salivary gland enlarged, lip hemorrhage, esophagitis, hiatal hernia, hematemesis, proctitis, irritable bowel syndrome, rectal hemorrhage, esophageal spasm

Frequency not reported: Dehydration[Ref]

Genitourinary

Common (1% to 10%): Incontinence, impotence

Uncommon (0.1% to 1%): Hematuria, dysuria, urinary frequency, cystitis, urinary retention, vaginal hemorrhage, amenorrhea, dysmenorrhea, menorrhagia

Frequency not reported: Sexual dysfunction (including changes in libido, ejaculation disorders, and anorgasmia)[Ref]

Hematologic

Common (1% to 10%): Leucopenia, purpura

Uncommon (0.1% to 1%): Anemia, lymphadenopathy

Rare (less than 0.1%): Thrombocytopenia, thrombophlebitis, leukocytosis, lymphocytosis, increased bleeding time

Frequency not reported: Blood creatine phosphokinase increased, coagulation defect[Ref]

Hepatic

Rare (less than 0.1%): Hepatitis, jaundice, elevated liver function tests (AST, ALT), and bilirubin, hepatomegaly, hepatotoxicity[Ref]

Metabolic

Common (1% to 10%): Weight gain, hyperglycemia

Postmarketing reports: Hyponatremia[Ref]

Musculoskeletal

Common (1% to 10%): Back pain, arthralgia, myalgia, twitching

Uncommon (0.1% to 1%): Tendonitis, arthritis, joint stiffness, joint swelling

Frequency not reported: Rhabdomyolysis, myoclonus

Postmarketing reports: Elevated creatine kinase, rhabdomyolysis[Ref]

Ocular

Common (1% to 10%): Amblyopia, conjunctivitis, diplopia, nystagmus

Uncommon (0.1% to 1%): Cataract, dry eyes, eye pain, visual field defect, photophobia, bilateral or unilateral ptosis, eye hemorrhage, hordeolum, eye twitching

Rare (less than 0.1%): Eye itching, abnormal accommodation, eye focusing problem, watery eyes, retinopathy, glaucoma, iritis, corneal disorders, lacrimal dysfunction, degenerative eye changes, blindness, retinal degeneration, miosis, chorioretinitis, strabismus[Ref]

Oncologic

Uncommon (0.1% to 1%): Breast cancer

Rare (less than 0.1%): Non-Hodgkin's lymphoma[Ref]

Other

Very common (10% or more): Fatigue (11%), fever (11%)

Common (1% to 10%): Asthenia, accidental injury, otitis media, tremor, pain

Rare (0.01% to 0.1%): Tinnitus

Very rare (less than 0.01%): Sudden unexplained death in patients with epilepsy

Frequency not reported: Sleepwalking, withdrawal symptoms, hearing loss, earache, tinnitus, inner ear infection, otitis, taste loss, unusual taste, ear fullness, perforated ear drum, sensitivity to noise, eustachian tube dysfunction, otitis externa, odd smell, labyrinthitis[Ref]

Renal

Rare (less than 0.1%): Acute renal failure[Ref]

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

You might ask your doctor if she is aware of these many side effects that Gabapentin has caused and then ask her if she is sure she still wants you to take it! There is a problem when the side effects can be worse than what you are trying to treat!

Art

Despe profile image
Despe in reply to chartist

Art,

Your thoughts on Passion Flower vs Melatonin?

chartist profile image
chartist in reply to Despe

Hi Despe,

Passion flower falls into a group of plants that have shown benefit for sleep, relaxation, anxiety, stress and to help induce calmness. I have only tried it for sleep and I tried a non extract form which had no noticeable benefit for me. If I were to try it again, I would use the extract form, but right now, melatonin is working for sleep again.

Passion flower is said to have other positive health effects but quality human studies are lacking and a search of PubMed turns up 935 studies whereas melatonin turns up over 28,000 studies and quite a few human studies that have shown positive results. I am likely biased when it comes to melatonin because so many studies have shown its health benefits and it is produced throughout the body as are melatonin receptors clearly showing that the body knows how to use melatonin and clearly has many uses for it. Melatonin is produced in the mitochondria throughout the body to help maintain and protect mitochondrial health. Mitochondria that are perturbed produce significant amounts of damaging ROS as is seen in many disease states and ill health including PD. Melatonin is the most potent antioxidant in the body through both direct and indirect effects

When you search PubMed for mitochondria and passion flower, you get two irrelevant results. My opinion is that comparing melatonin and passion flower is like comparing apples and oranges. They both have the potential for good health effects, but are not really comparable due to each having vastly different mechanisms of action.

Art

Despe profile image
Despe in reply to chartist

Art, thanks! You are absolutely right about Melatonin, but it's not about sleep, it's rather about anxiety and stress.

My sister's young MD asked her to take Passion Flower for anxiety and stress, as she's been very stressful the last few days due to continuous STRONG earthquakes. That made me think that Passion Flower can help with anxiety and stress my husband experiences. His sleep has so much improved with the addition of Megnesium Glysinate to his Melatonin, it's amazing.

pubmed.ncbi.nlm.nih.gov/292...

chartist profile image
chartist in reply to Despe

Despe,

Since human studies are scarce for PF, we are mainly relegated to peoples reviews and sleep, anxiety and stress relief are three that are often mentioned in PF reviews.

Regarding magnesium glycinate and melatonin for sleep.... 😫😫😫😫😫! Yes they are a good combination and healthful. The combo mag pill of mag-T, magnesium glycinate and magnesium taurate is also good. Kia recommended that one as useful for sleep. The study I wrote about used magnesium, melatonin and zinc to good effect for sleep. These are all healthful and non addictive and they help many sleep and reduce nocturia!

Art

Despe profile image
Despe in reply to chartist

Thanks, Art. All that you mentioned are on my husband's menu (except Mg Taurate). :) Indeed, the nocturia is not there anymore, unbelievable!

chartist profile image
chartist in reply to Despe

I am very happy that your husband is getting noticeable benefit, Despe! Thank you for the update.

Art

Despe profile image
Despe in reply to chartist

My pleasure, Art!

I would like to ask you if one takes all three forms of B3 would that be harmful? Thank you.

"There is a problem when the side effects can be worse than what you are trying to treat!" AMEN!

It reads like a TV commercial where the narrator tells you the possible side effects in 10 seconds - who would ever take these drugs if they were fully informed?!

SE

I'd like to add to Art's comment on Gabapentin.

My mother got TIAs from quiatapin. I found out through my own genetic testing that quiatapin is contraindicated for me. Doctors don't screen for this.

First, do no harm and exercise the precautionary principal.

I buy high quality supplements and read labels. I avoid combination supplements with unnecessary additives and buy single ingredients to make my own blend. I can't swallow pills anymore and pulling capsules open is a 🫓 (pita), this way I can put it in juice or a smoothie, some are by injection or intranasal. Lots of ways to get them where they need to go.

SE

MBAnderson profile image
MBAnderson in reply to chartist

Point well made.

It blows me away that a doctor would use as the rationale for prescribing gabapentin because supplements are not as well-regulated.

All supplements like all doctors are not created equal.

I've always been amazed how many pharmaceuticals have a dramatic effect on unrelated processes in the body. I mean, here is a drug that can cause a myriad of ear problems or kill you if you have epilepsy. I don't see the connection between the 2.

It seems to me an enormous imbalance in the ongoing debate on this forum as to whether or not supplements are effective and the consequences of (what are most often nonessential prescription of) pharmaceuticals.

In other words, there is a big difference between being ineffective & being dead.

chartist profile image
chartist in reply to MBAnderson

....and he's back!

Now that is the Marc I know and remember!!!

Marc, if any supplement had a list of side effects like Gabapentin does, it would be banned by the FDA in a New York minute, but Gabapentin is regularly prescribed and has been for over 25 years, it's that simple!

Art

Is she saying that the drug industry is not rife with fraud? Well, any sane person knows differently. For instance if Congress didn't protect the vaccine industry from all liability they would have been out of business a long time ago. Yes, you have to do your best to find quality supplements and avoid products from China. But as you will soon realize just about everything we own comes from China. Which is one of many reasons we are where we are in America today. We have shipped all our jobs overseas. Natural supplements usually are safe and come with no lasting side effects if any. I always try to get organic supplements that have little if any added ingredients. We use organic orotate lithium in small amounts 5 mg. once in morn and once at night for anxiety and have recently added Organic India Ashwagandha for good sleep and energy. If you have a side effect from any supplement, just stop taking it and the side effect will go away. Unfortunately it doesn't always work that way with drugs.

👍👍

Doctors get most of their treatment information from pharmaceutical companies, according to Robert Yoho, MD, in his book Butchered by “Healthcare.”

At this writing (September 2021), the book is available for free download at robertyohoauthor.com/

Very eye-opening, especially the chapter on mental health drugs.

Butchered by Healthcare, free book download.

A lot of input on Gabapentin but is it true for Lyrica as well? I would welcome some input on OTC treatement for neuropathy. I was on Gabapentin up to over 2.7 gms a day. I was switched to Lyrica an now up to the max recommended for this drug. Any one have suggestions for neuropathy OTC RX??? Are there any other OTC supplements used off label like prescriptions for treatement for Global neuropathy, I am also plagued with Parkinson's.

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