Tegretol carbamazepine a safe option

One of the older but still more frequently prescribed drugs that is still used to treat peripheral neuropathy, is Carbamazepine (Tegretol). It's a well-known anti-seizure drug but has recently come under scrutiny regarding its interaction with certain HIV anti-retrovirals, especially Prezista (see here). Now, while I accept that reading every leaflet accompanying drugs can scare the life out of you and even if the side effects below are a worst case scenario, this drug information from drugs.com (see link below) shows that there are quite a few other considerations to bear in mind before taking Tegretol. I'm not an expert so concede that there may be very good reasons but question as to why it is still being promoted by the manufacturer and widely prescribed by doctors, when the potential side effects are so patently unpleasant and for certain HIV-patients, so dangerous?

Tegretol
Generic Name: carbamazepine (oral) (kar ba MAZ e peen) Brand Names: Carbatrol, Epitol, Equetro, TEGretol, TEGretol XR

What is Tegretol?

Tegretol (carbamazepine) is an anticonvulsant. It works by decreasing nerve impulses that cause seizures and pain.
Tegretol is used to treat seizures and nerve pain such as trigeminal neuralgia and diabetic neuropathy. Carbamazepine is also used to treat bipolar disorder.
Tegretol may also be used for purposes not listed in this medication guide.

Important information about Tegretol

Tegretol may cause severe or life-threatening skin rash, especially in people of Asian ancestry. Your doctor may recommend a blood test before you start the medication to determine your risk of this skin reaction. Seek emergency medical attention if you have a fever, sore throat, headache and skin pain, followed by a red or purple skin rash that spreads and causes blistering and peeling.

You should not take Tegretol if you have a history of bone marrow suppression, if you are also taking nefazodone, or if you are allergic to an antidepressant such as amitriptyline (Elavil, Vanatrip, Limbitrol), desipramine (Norpramin), imipramine (Tofranil), or nortriptyline (Pamelor).

Tegretol may cause harm to an unborn baby, but having a seizure during pregnancy could harm both the mother and the baby. Tell your doctor right away if you become pregnant while taking Tegretol for seizures. Do not start or stop taking Tegretol during pregnancy without your doctor's advice.

Do not use Tegretol if you have used an MAO inhibitor such as furazolidone (Furoxone), isocarboxazid (Marplan), phenelzine (Nardil), rasagiline (Azilect), selegiline (Eldepryl, Emsam, Zelapar), or tranylcypromine (Parnate) in the last 14 days.

Before you take Tegretol, tell your doctor if you have heart disease, high blood pressure, high cholesterol, liver or kidney disease, glaucoma, a thyroid disorder, lupus, porphyria, or a history of mental illness or psychosis.

You may have thoughts about suicide while taking Tegretol. Your doctor will need to check you at regular visits. Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

There are many other drugs that can interact with Tegretol. Tell your doctor about all medications you use. This includes prescription, over-the-counter, vitamin, and herbal products. Do not start a new medication without telling your doctor. Keep a list of all your medicines and show it to any healthcare provider who treats you.

Do not stop using Tegretol without first talking to your doctor, even if you feel fine. You may have increased seizures or unpleasant withdrawal symptoms if you stop using Tegretol suddenly.

Before taking Tegretol

Do not use Tegretol if you have used an MAO inhibitor such as furazolidone (Furoxone), isocarboxazid (Marplan), phenelzine (Nardil), rasagiline (Azilect), selegiline (Eldepryl, Emsam, Zelapar), or tranylcypromine (Parnate) in the last 14 days. You should not take Tegretol if you are allergic to carbamazepine, or if you have:
•a history of bone marrow suppression
•if you are also taking nefazodone; or
•if you are allergic to an antidepressant such as amitriptyline (Elavil, Vanatrip, Limbitrol), desipramine (Norpramin), imipramine (Tofranil), or nortriptyline (Pamelor).

Tegretol may cause severe or life-threatening skin rash, especially in people of Asian ancestry. Your doctor may recommend a blood test before you start the medication to determine your risk of this skin reaction.

To make sure you can safely take Tegretol, tell your doctor if you have any of these other conditions:
•heart disease, high blood pressure, high cholesterol or triglycerides;
•liver or kidney disease;
•glaucoma;
•a thyroid disorder;
•lupus;
•porphyria; or
•a history of mental illness or psychosis.

Patients of Asian ancestry may have a higher risk of developing a rare but serious skin reaction to Tegretol. Your doctor may recommend a blood test before you start the medication to determine your risk of this skin reaction.

You may have thoughts about suicide while taking Tegretol. Tell your doctor if you have new or worsening depression or suicidal thoughts during the first several months of treatment, or whenever your dose is changed.

Your family or other caregivers should also be alert to changes in your mood or symptoms. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments.

FDA pregnancy category D. Tegretol may cause harm to an unborn baby. Do not start taking Tegretol without telling your doctor if you are pregnant or planning to become pregnant. Use effective birth control while you are taking this medicine. Although Tegretol may harm an unborn baby, having a seizure during pregnancy could harm both mother and baby. If you become pregnant while taking Tegretol, do not stop taking the medicine without your doctor's advice. Seizure control is very important during pregnancy. The benefit of preventing seizures may outweigh any risks posed by taking Tegretol. Follow your doctor's instructions about taking this medicine while you are pregnant.

Carbamazepine can pass into breast milk and may harm a nursing baby. You should not breast-feed while you are using Tegretol. Carbamazepine can make birth control pills less effective. Ask your doctor about using a non-hormone method of birth control (such as a condom, diaphragm, spermicide) to prevent pregnancy while taking Tegretol.

How should I take Tegretol?

Take Tegretol exactly as prescribed by your doctor. Do not take in larger or smaller amounts or for longer than recommended. Follow the directions on your prescription label. Your doctor may occasionally change your dose to make sure you get the best results.

Do not crush, chew, or break an extended-release Tegretol tablet. Swallow the pill whole. Breaking the pill would cause too much of the drug to be released at one time.

Shake the Tegretol oral suspension (liquid) well just before you measure a dose. Measure the liquid with a special dose-measuring spoon or medicine cup, not with a regular table spoon. If you do not have a dose-measuring device, ask your pharmacist for one.

It may take up to 4 weeks before your symptoms improve. Keep using the medication as directed and call your doctor promptly if this medicine seems to stop working as well in preventing your seizures. Tegretol can lower blood cells that help your body fight infections. This can make it easier for you to bleed from an injury or get sick from being around others who are ill.

To be sure Tegretol is not causing harmful effects, your blood cells and kidney function may need to be tested often. Do not miss any follow up visits to your doctor for blood or urine tests. Your doctor may also recommend having your eyes checked regularly while you are taking this medicine.

Do not stop using Tegretol without first talking to your doctor, even if you feel fine. You may have increased seizures or unpleasant withdrawal symptoms if you stop using this medicine suddenly. Wear a medical alert tag or carry an ID card stating that you take Tegretol. Any medical care provider who treats you should know that you take seizure medication.

Store this medicine at room temperature away from moisture, heat, and light.

What should I avoid while taking Tegretol?

This medication may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be alert. Avoid drinking alcohol. It can increase some of the side effects of Tegretol, and can also increase your risk of seizures.

Avoid exposure to sunlight or tanning beds. Tegretol can make you sunburn more easily. Wear protective clothing and use sunscreen (SPF 30 or higher) when you are outdoors.

Grapefruit and grapefruit juice may interact with Tegretol and lead to potentially dangerous effects. Discuss the use of grapefruit products with your doctor.

Tegretol side effects

Get emergency medical help if you have any of these signs of an allergic reaction to Tegretol: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Call your doctor at once if you have a serious side effect such as:
•pale skin, feeling light-headed, rapid heart rate, trouble concentrating;
•fever, chills, sore throat, mouth and throat ulcers;
•easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
•confusion, agitation, vision problems, hallucinations;
•feeling short of breath, swelling of your ankles or feet;
•urinating less than usual;
•jaundice (yellowing of the skin or eyes); or
•severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Less serious Tegretol side effects may include:
•feeling dizzy, drowsy, or unsteady;
•nausea, vomiting, diarrhea, constipation, stomach pain;
•headache, ringing in your ears;
•dry mouth, swollen tongue; or
•joint or muscle pain, leg cramps.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What other drugs will affect Tegretol?

Cold or allergy medicine, narcotic pain medicine, sleeping pills, muscle relaxers, other seizure medicines, and medicine for depression or anxiety can add to sleepiness caused by Tegretol. Tell your doctor if you regularly use any of these other medicines.

This list is not complete and there are many other drugs that can interact with Tegretol. Tell your doctor about all medications you use. This includes prescription, over-the-counter, vitamin, and herbal products. Do not start a new medication without telling your doctor. Keep a list of all your medicines and show it to any healthcare provider who treats you.

http://www.drugs.com/tegretol.html

Unscrupulous Neuropathy Cure Criminals

Today's article from sciencebasedmedicine.org (see link below) may be one of the longest this blog has ever posted but it's also one of the most important and reflects widespread disquiet at the mushrooming number of clinics, courses and conferences that claim to be able to cure your neuropathy problems...at a price!! We are living with a disease for which there is no current cure of any kind. The best we can hope for is a reduction of the severity of the symptoms and even then we have to try out many drugs before we find one that will do just that. Little wonder that people become desperate and grab at straws and lurid headlines claiming to solve your health problems and also little wonder that there are thousands of con-artists and criminals who are prepared to part you from your money for very little result, if any. This article is full of specific examples regarding specific practices but it may just be the tip of the iceberg. Reading it may open your eyes to the pressures from unscrupulous dealers that are upon us and hopefully persuade you to avoid them like the plague!

The Straw Protocol: A Chiropractor’s Aggressively Promoted Neuropathy Treatment
 Posted by William M. London on February 27, 2015 

Full-page ads promoting free dinner seminars addressing the topic of “Non-surgical, drug-free approach to relief from Peripheral [sic] Neuropathy [sic]” appeared last year on at least nine Sundays in the main news section of the print edition of The Los Angeles Times. The seminars were scheduled at various restaurants in Orange County, Los Angeles County, and Inland Empire.

The Los Angeles Times claims a Sunday circulation of 962,192 and a readership of two million for the Sunday main news section. The cost of full-page ads in the main section of Sundays varies, but I was given a quote of $32,500 by an advertising consultant for the paper.

The ads included on their upper left, in small print, the words “HEALTH TODAY” and on the same line—though perhaps less noticeably—at the far right of the page the word “ADVERTISEMENT.” In a much larger font was the headline:

Do You Suffer from One Of These Seven Symptoms Of This Often Misdiagnosed Problem?

It was followed by this subtitle:

Tens of Millions Suffer And Often Don’t Know Where to Turn

The ads indicated that discussion at the seminars would include:

What REALLY causes Peripheral [sic] Neuropathy [sic]
Three crippling effects of Neuropathy [sic]
Dangers associated with medications
The Straw Protocol, which utilizes proprietary treatment methods and provides outstanding results for people who suffer from Neuropathy

The ads warned that seating at the dinner seminars would be limited and instructed readers to call for a reservation and to provide the RSVP code in the ad (apparently to enable the marketer to keep track of where each caller found out about the seminars). Next to the toll-free number provided in each ad was the name of the advertiser: OPTIMAL HEALTH, and then below it in much smaller, easily overlooked print: Straw Chiropractic. Keeping the print small for the word chiropractic is a clever promotional tactic; many prudent consumers would not be inclined to seek chiropractors for peripheral neuropathy treatment.

I called the advertised phone number, but since I said (honestly) that I didn’t have any of the seven symptoms of neuropathy listed in the ad, I would not be permitted to attend any of the free dinner seminars. (I was disappointed to not qualify for a free dinner since I’m on a tight budget just like many other critics of health pseudoscience who get falsely accused of being paid off by Big Pharma.)

However, the ad offered a second phone number to call in order to obtain more detailed information and answers to common questions about the Straw Protocol without a having to indicate one’s symptoms and attend a seminar. I called the number, 888-858-9291, and left a message with my name and address along with a request that the advertised “Free special report and DVD” be mailed to me. The materials arrived a few days later.


click to enlarge
The promotional DVD

The title on the label of the DVD is “Our Patients Speak” followed by “The Neuropathy Treatment Center by Optimal Health Straw Chiropractic.” On the left side of the label is the instruction: “Call Today for a FREE Consultation and Evaluation!” (The exclamation mark here is a strong signal of hype.) On the right side of the label, it exclaims “$249 Value!” I guess that’s supposed to be the value of the consultation and evaluation rather than the value of the DVD.

On the bottom of the label is a number to call to find the location to find the nearest location of the Neuropathy Treatment Center. I called and was told there are five locations. Three are in Los Angeles County: Glendale, Placentia, and Gardena. The other locations are in Corona (Inland Empire) and Lake Forest (Orange County). I learned from the website of the practice, optimalhealthsc.com, that there is also an “affiliated practice,” Restore Medical Group Greathouse Chiropractic Inc., with locations in San Diego and Sunnyvale.

The DVD plays for just a few minutes and consists of five neuropathy patients expressing satisfaction with treatment from the Neuropathy Treatment Center and dissatisfaction with medications previously prescribed for them from other doctors. Many people can be persuaded to try treatments based on such testimonials, but testimonials regarding clinical benefits are not trustworthy. Consumers often fail to consider that the experiences described in testimonials may poorly represent the experiences of most people who try a new advertised treatment. If the patients actually experienced relief from their neuropathy while they were receiving Straw Protocol treatment, it doesn’t necessarily mean that the relief is attributable to the treatment. And it’s important to recognize that some chiropractors who have solicited testimonials from patients have been found to provide incentives and/or discounts to patients who offer testimonials.

The cover letter for the mailing comes with instructions to watch the enclosed DVD before reading the enclosed special report. Advertisers recognize that this sequence tends to make their messages more persuasive. It’s likely that people tend to be less suspicious of information provided in literature after they have been exposed to relatable role models who appear sincere while offering encouraging stories.


The special report

The tabloid layout of the report reminds me of the many advertising mailers made to look like health newsletters that are sent to people who get on mailing lists of quacks. I wrote about such “Advertising Mailers in Disguise” in 2001 when I served as president of the National Council Against Health Fraud, Inc.

The front cover of the report is made to look official with the words “Optimal Health’s” in the upper left-hand corner, “Summer 2014” in the upper right hand corner, “Natural Health Journal” as a heading, and “Practical Solutions for Optimum Health & Healing” as a sub-heading. The rest of the cover shouts out its hype with lots of bold lettering, enlarged lettering, varied font styles, varied colored lettering, all-caps, italicized lettering, exclamation points, a photo of an older woman along with a quotation that supposedly comes from her, and a concluding sentence in title case. Here’s the text:

A REVOLUTIONARY new way of treating peripheral neuropathy can help you throw away your pills and…

“KISS YOUR PAIN & NUMBNESS GOODBYE”
BANISH THE NUMBNESS!
Sleep restfully without tossing & turning or stabbing and shooting pain waking you!
End those weird ‘skin-crawling’ feelings!
No more limitations on your activities!
Regain your good balance!
Live the life you deserve!

“I now have feeling in my feet that I have not felt in over twenty years!!”

Thousands Have Already Experienced This Advanced Method of Treatment and Found Freedom From The Vise-Like Hold Neuropathy Had Over Their Lives!

See Inside [along with a curved arrow as a guide to turn the page]


I suggest that health consumers should be wary of tabloid-style messages telling patients they can have their greatest hopes realized from a supposedly REVOLUTIONARY treatment.

The inside of the report consists of eight pages (page 2 through 9) along with a back cover offering tabloid-style hype similar to what appears on the front cover. Page 2 consists of a letter to the reader that indicates the treatment protocol “has already helped more than 3000 people over the last three years!” In an attempt to overcome any reasonable skepticism, the letter includes this paragraph:

This is neither far-fetched [sic] hope nor over-the-top hype like you’ve seen thrown around by ‘Miracle Pill” hucksters.

Well, I’ll be the judge of that. And so will you if you read on.

Page 3 consists of three testimonials and an introduction to “Dr. Phil Straw, D.C.” (I previously pointed out in my discussion of the supposed experts interviewed in the execrable first part of the video “The Quest for the Cures…Continues” that it’s a bad sign when practitioners are introduced redundantly with “Dr.” before their names and a degree after their names.)

I learned that Dr. Straw is the author of the 2014 book Neuropathy: How to Relieve Foot Numbness, Tingling, Burning, and Cramping Without Drugs or Surgery, he earned his “under-graduate [sic] degree from the University of California Santa Barbara in 1988 and doctor [sic] of Chiropractic in 1995” (from an unidentified institution, but clearly not UCSB), that he’s a “[s]ought-after speaker on peripheral neuropathy and the importance of maintaining optimum health through natural medicine and proper nutrition” (and I would be similarly sought-after if I also offered free dinners with my free seminars), and that he’s the “Creator of THE STRAW PROTOCOL.”

By the way, I am following THE LONDON PROTOCOL in writing about THE STRAW PROTOCOL (and you are supposed to be very impressed indeed by the capital letters in the name of my protocol).

Part of THE LONDON PROTOCOL is to check for disciplinary actions against practitioners who advertise aggressively. I found that, in November 2012, California’s Board of Chiropractic Examiners issued a citation to Philip Arthur Straw for his advertisements and Straw paid his fine in full.

I contacted a staff member serving California’s Board of Chiropractic Examiners and obtained a copy of the citation sent to Dr. Straw, which remains a public record. The section of the letter with the heading “Cause of Citation” reads:

On July 27, 2012 the Board received a complaint from N. F. alleging that the claims made in your advertisements, “Which of These Warning Signs Could Lead to Foot Amputation?” and “Don’t Let Your Neuropathy Put You in a Wheel Chair” are misleading to the public. The advertisements and your response to the Board’s Inquiry were forwarded to a chiropractic expert consultant for review. The Board expert opined that you have used worst-case clinical scenarios as headlines in your advertisements, and in doing so you have engaged in the use of misrepresentations, distortions, sensational or fabulous statements, or which have a tendency to deceive the public. In doing so, you are in violation of CCR section 311 advertisements.

In addition, the Board’s expert opined that your self-appointed designation as a “leading regional authority” and “expert” in such matters is a sensational, distorted statement that has a tendency to deceive the public. The Board expert added that the Board of Chiropractic Examiners does not recognize such expertise, and you have not demonstrated that you possess any diplomate status that might lend truthfulness to such a claim. In doing so, you are in violation of CCR section 311 advertisements.

As mentioned by Los Angeles Times business and consumer columnist David Lazarus in a column published August 25th 2014, the fine was only $500. That slap on the wrist tells you how seriously the Board of Chiropractic Examiners takes CCR section 311. Although the ads from Straw in 2014 didn’t have the same fear-mongering headlines and claims of expertise as the ads mentioned in the 2012 complaint, the claim that the Straw Protocol provides outstanding results should be viewed as a CCR section 311 violation.

Another part of THE LONDON PROTOCOL is to check for publication of clinical research findings in the scholarly literature. A Google Scholar search on “Philip Straw” revealed no such publications. No surprise! I see little reason to consider the Straw Protocol as an “Advanced Method of Treatment” as the ads in 2014 characterized it.

Page 4 of the special report consists of a brief description of peripheral neuropathy in simple language followed by criticisms of the drugs prescribed the medical community to treat peripheral neuropathy. The discussion includes the misleading suggestion that medical doctors treat peripheral neuropathy only to manage symptoms, with drugs and sometimes surgery. It disregards how standard treatment begins with addressing conditions underlying peripheral neuropathies and includes mechanical aids for symptom management. It includes a common medical establishment-bashing trope:

Perhaps the reason you may not have heard of the treatment options available for your peripheral neuropathy (like the method described on the next couple of pages of this report) is because of the stubbornly-held notion that, when it comes to medical treatments that don’t involve a needle or a pharmaceutical company’s pill, the establishment community can be ‘a bit set in their ways.’

Then again, perhaps this is a straw person (or straw establishment community) attack and the popular press has ignored THE STRAW PROTOCOL because it’s just one of the hundreds of non-evidence-based gimmicks for healing promoted by chiropractors. If there was compelling clinical research evidence indicating that the Straw Protocol is safe and the advertising claims made for it are valid, I think we would have heard about it (especially from the Straw-supported Los Angeles Times).

(A fact sheet from the National Institute of Neurological Disorders and Stroke provides a much more informative description of peripheral neuropathy than does Straw’s report. The fact sheet describes the classification, symptoms, causes, diagnostic tests, and treatment, for peripheral neuropathy.)

Pages 5 through 8 include eleven more testimonials, more hype from Dr. Straw, and a description of the four steps of the Straw Protocol (also described on Straw Chiropractic’s website).
Step 1 (Stimulate) of his protocol uses an electronic device that, we are told, has approval for a number of pain indications, but is not a transcutaneous electrical nerve stimulation device. It’s good to be wary of devices that promoters fail to identify by name. When practitioners are secretive about their treatments, they sidestep scrutiny. I’m reminded of a catchphrase of Dana Carvey’s Church Lady character: “How convenient!”
Step 2 (Rejuvenate) is to increase overall circulation by utilizing light emitting diode (LED) therapy. The description of Step 2 also includes a reference to investigations by NASA. Such references are common in the promotion of non-validated health gimmicks.

According to the BlueCross BlueShield of Tennessee Medical Policy Manual’s statement on LED therapy (reviewed most recently on 9/11/14):

Light emitting diode therapy for the treatment of conditions / diseases, including but not limited to diabetic peripheral neuropathy, lymphedema, non-healing wounds, tendonitis, capsulitis, and pain is considered investigational. (Emphasis in original.]

Investigational means not appropriately promoted in free dinner seminars to recruit paying patients. Another key point in the statement:

Scientific evidence in peer review literature is lacking regarding the use, safety, improvement or effectiveness on health outcomes for light emitting diode therapy.
Step 3 (Activate) “uses different frequencies of vibration on different areas of your body which further stimulates new capillary and nerve regeneration.” It would appear that Straw’s patients are shaken (if not stirred), but it isn’t clear that they’re pickin’ up good vibrations, excitations, or healing.

Exposure to some sources of vibration is one of many recognized causes of peripheral neuropathy. That doesn’t mean other sources of vibration provide relief. A review article published in 2015 on whole body vibration (WBV) for rehabilitation of peripheral neuropathies concluded:

The results of this literature search suggest insufficient evidence to assess the effectiveness for the effects of WBV on neuropathic pain, muscle strength and balance in patients with peripheral neuropathies, as there is a clear lack of methodologically high quality research on the subject.

In other words, WBV is a non-validated treatment.
Step 4 (Empower) is described as “truly THE KEY to not only reaching your desired level of pain-free health, but staying there for as long as you like.” It amounts to “nutritional education and proper supplementation” against chronic inflammation.

Inflammation is a complex bodily response to infection and injury that can be either beneficial or harmful. While chronic inflammation appears to play a role in the development of some chronic diseases, it is unclear that any special supposedly anti-inflammatory regimen of foods and dietary supplements can provide clinically-significant relief to peripheral neuropathy patients.

Dietary supplements are frequently tainted with drugs and often do not contain ingredients in doses listed on their labels. Paying more for practitioner-recommended (or -dispensed) supplement formulations provides illusory assurance.

On page 9 of the report is this pitch (bolding in original):

If you call and schedule your appointment for your own exam within 7 days of receiving this package, I will waive the entire $249 fee for you.

It’s followed by an offer of a free copy of Straw’s book at the exam.

I didn’t call within seven days. Soon after I received a letter from Straw Chiropractic renewing the offer for the free exam if I called within two to three days and the book would still be available for me.


click to enlarge

After failing to make the second deadline, I received a second notice which began “Hello…?” followed by a letter beginning with the words: “You’re smart. I can tell.” The letter went on to express surprise that I hadn’t called. The free diagnostic exam offer was still available along with the free book, but “is just not going to be an option for very much longer.” The letter came with a flyer featuring eleven more testimonials. 



click to enlarge


click to enlarge

I waited for months to call to find out about costs of the Straw Protocol. The initial free exam and consultation offer was still available. 

Costs to patients

Consumers should be wary of high-pressure sales pitches for limited time offers. Practitioners who place full-page newspapers ads need to work hard to get patients into their clinics. They need to recoup their investments in advertising (e.g., newspaper ads) and direct selling (e.g., dinner seminars) and then earn enough from fees charged to patients to make good money.

I reached a sales representative over the phone for Straw Chiropractic and was told that if I were a candidate for the treatment (that I really had peripheral neuropathy and it wasn’t too advanced), it would cost me $500 to $10,000 for five to fifteen weeks of treatment. Insurance doesn’t pay for any of the treatment. The representative wasn’t sure whether the quoted figures include the cost of purchasing dietary supplements.
Advertising in 2015

Thus far in 2015, in some, but not all Sundays, ads of varying sizes for the Straw Protocol have appeared in the main section of The Los Angeles Times. The most recent advertisements (as of this writing), on February 15th and 22nd were smaller than a quarter of a page and included an invitation to call for the free DVD and report. None of the newer ads included invitations to free dinner seminars.

However, I noticed on another page in the main section of the paper a half-page ad for free dinner seminars from the NEUROPATHY RELIEF CENTER of Long Beach Presented by Ballerini Chiropractic. The pitch is very similar to the pitch used by Straw Chiropractic. I will need to investigate further to find out the source of marketing campaigns used by chiropractors to promote peripheral neuropathy treatments services.

Other chiropractors who promoted free dinner seminars

Dr. Straw’s marketing campaign featuring free dinner seminars reminds me of similar recent campaigns by other chiropractors. For example, as I described previously:

[Brandon Lee Babcock, D.C.] pitched a bogus nutritional cure for diabetes. But, as reported December 9th, 2013 by The Salt Lake Tribune, his scheme bilked older adults in Utah of thousands of dollars. To recruit patients, he offered free gourmet dinners where attendees were shown video testimonials and given information about Babcock’s supposed “diabetes breakthrough.” He tricked patients into signing papers that established lines of credit with Chase Health Advance and he maxed out the $6,000 limit when patients tried to withdraw from his services. Some patients testified that Dr. Babcock and his staff misled them into signing up for credit without their knowledge or consent. Others said Babcock refused to provide refunds despite a 30-day opt-out guarantee and a promise of 100% satisfaction.

In 2008, the Utah Department of Occupational and Professional Licensing (DOPL) issued a “non-disciplinary cease-and-desist order” after finding that he advertised treatments for conditions he wasn’t qualified to treat: depression, multiple sclerosis, fibromyalgia, learning problems, attention deficit disorder, allergies, hormone replacement relief, sleep problems and memory loss.

In April 2012, the DOPL suspended Babcock’s chiropractic license by emergency order. In August 2012, West Jordan City revoked Babcock’s business license. The Salt Lake Tribune noted, however, that he continued to lead seminars promoting his program to reverse Type II diabetes.

In October 2013, a jury convicted him of six third-degree felony counts of exploiting a vulnerable adult. In December 2013, he was sentenced to six months in jail.

Colorado-based chiropractors Brandon Credeur, D.C. (a classmate of Brandon Babcock at Parker College of Chiropractic) and his wife Heather Credeur, D.C. also used newspaper advertising to attract diabetics to seminars following free gourmet dinners to promote their “functional endocrinology” treatments to diabetics and people with symptoms of low thyroid function. Jann Bellamy has discussed both Babcock and the Credeurs previously on ScienceBasedMedicine.

A September 2011 complaint from Colorado’s Board of Chiropractic Examiners against Brandon Credeur charged him with violations of the Board’s rules regarding scope of practice; misleading, deceptive, false, or unethical advertising; untrue, deceptive or misleading practices regarding unproven and/or unnecessary services; and record keeping requirements. But instead of losing his chiropractic license, as many of his former patients had hoped, following a hearing in an administrative court room, Credeur’s case ended in a settlement in which he admitted to nothing and agreed to keep better records.

On June 19th, 2013, the Colorado Medical Board sent an order to Brandon and Heather Credeur to cease and desist practicing medicine without a license. That same day, they declared bankruptcy to the dismay of former patients who have sued them to get their money back. A ruling from an administrative law judge is anticipated in response to the Credeur’s challenge to the Medical Board’s order.

The Credeurs remain licensed to practice chiropractic in Colorado.

Candice McCowin, an Irvine, California chiropractor ran newspaper ads claiming breakthrough treatments for diabetes and other chronic illnesses to be discussed at free dinner events. In March 2014, the California Board of Chiropractic Examiners cited the “free diabetic guides” she distributed as misleading ads. As noted in a column by David Lazarus, “McCowin paid a $500 fine and agreed to ensure that future ads ‘not be construed as misleading or deceiving to the public.” Dr. McCowin, I will be looking for your ads.
A few final thoughts

Advertisements that appear in The Los Angeles Times (or any other newspaper) should never be presumed to be trustworthy. The screening processes used by advertising departments of news organizations are typically inadequate to assure that ads are not false or misleading.

The $500 fine for “advertising in a potentially deceptive manner and for portraying himself as a neuropathy expert” that Dr. Straw paid in 2012 was no serious deterrent. I consider recent advertisements by Straw Chiropractic in newspapers and in mailers to patients to be misleading.

The direct selling approach of free dinner seminars and free initial consultations can be seductive. People often respond to acts of apparent kindness and generosity with a sense of obligation to reciprocate. But reciprocation to a sales pitch for a non-validated treatment protocol is unlikely to lead to relief and is likely to be costly.

I don’t expect that licensing boards in California are inclined to take appropriate action to protect consumers from inappropriate advertising of health services. But consumers need to file complaints and they need to let legislators know that they object to practitioners who deceptively advertise health services for financial gain and to licensing boards that fail to adequately protect the public.

William M. London is a professor of public health at California State University, Los Angeles and a co-author of the sixth, seventh, eighth, and ninth (2013) editions of the college textbook Consumer Health: A Guide to Intelligent Decisions. He is one of two North American editors of the journal Focus on Alternative and Complementary Therapies, associate editor of the free weekly e-newsletter Consumer Health Digest, and co-host of the Credential Watch site. Most of his recent writings about extraordinary claims for health products and services can be found at Swift, published by the James Randi Educational Foundation, and the Skeptic Ink Network.

http://www.sciencebasedmedicine.org/the-straw-protocol-a-chiropractors-aggressively-promoted-neuropathy-treatment/

Peripheral Neuropathy 101

Today's post from mollysfund.org (see link below) is more or less a neuropathy 101 guide to the disease and is especially useful to people new to the condition or the symptoms, or those who wish to brush up on their basic knowledge. The information is drawn from various sources but is pretty much entirely accurate, according to current medical opinion. Certainly worth a read, using as a reference, or as a recommendation to others.

What is peripheral neuropathy?
Article by : Karrie Sundbom February 2015 

Peripheral neuropathy is a general term for a series of disorders that result from damage to the body’s peripheral nervous system. The body’s nervous system is made up of two parts; the central nervous system (CNS) and the peripheral nerve system (PNS). The CNS includes the brain and the spinal cord. The PNS connects the nerves that run from the brain and spinal cord to the rest of the body. This includes the legs, arms, hands, feet, joints, eyes, ears, mouth, nose and skin. These neurons transport signals about physical sensations back to your brain.

An estimated 20 million people in the United States have some form of peripheral neuropathy, a disorder that results from damage that occurs to your peripheral nerves. These damaged or destroyed nerves can no longer send out messages, or they send incorrect or distorted information, between the brain and spinal cord and the skin, muscles or other parts of the body. Generally speaking, this often causes unusual sensations, burning, numbness, weakness, loss of balance, and even pain. The symptoms usually occur in your hands and feet, but other areas of your body can also be affected. There are three types of peripheral nerves and all of them can be affected by peripheral neuropathy. Peripheral neuropathy is also categorized by the size of the nerve fibers involved, large or small.

The three types peripheral nerves are:
Sensory Nerves: These connect to your skin
Motor Nerves: These connect to your muscles
Autonomic Nerves: These connect to your internal organs.

It can be scary to get diagnosed with any disease, especially one with a ominous sounding name like peripheral neuropathy. We hope that by providing information in this blog, about the symptoms, diagnosis, treatment, prevention and some potential causes of peripheral neuropathy, you will feel more empowered, and armed with the information that will help you live your best life with this condition. Back to top

What causes peripheral neuropathy?

There are many causes of neuropathy. Approximately 30% of neuropathies are “idiopathic,” meaning that the cause is unknown and in another 30% of cases, diabetes is the cause. According to some studies, nearly 60 percent of diabetics have some sort of nerve damage. This damage is often due to high blood sugar levels, and the risk for neuropathy increases for diabetics who are over the age of 40, have high blood pressure, or are overweight. Having a family history of peripheral neuropathy increases the chances of developing the disorder. However, a variety of factors and underlying conditions may also cause this condition.

Some other causes of peripheral neuropathy may include:
 
Autoimmune disorders: Diseases in which the immune system attacks the body’s own tissues can lead to nerve damage. This can include disorders such as systemic lupus erythematosus, Sjögren’s, rheumatoid arthritis, etc.
Infections: This can include certain bacterial or viral infections such as Lyme disease, shingles, Epstein Barr virus, hepatitis C, leprosy, HIV, and diphtheria.
Heredity: Disorders such as Charcot-Marie-Tooth disease are hereditary types of neuropathy.
Tumors: Peripheral neuropathy can occur as a result of tumors or growths putting pressure on nerves.
Nutritional imbalances and vitamin deficiencies: B vitamins, including B-1, B-6 and B-12, vitamin E and niacin are crucial to nerve health, imbalances and deficiencies can lead to peripheral neuropathy.
Traumatic injury: Traumatic injury from sports or vehicular accidents can sever or damage peripheral nerves. Pressure on nerves may also result from having a cast, using crutches or repeating a motion many times, such as typing (this is often referred to as carpal tunnel syndrome, a type of peripheral neuropathy).
Exposure to poisons or toxins: This includes those that contain heavy metals or chemicals, lead, mercury, and arsenic. In addition, neuropathies have also been known to have been caused by certain insecticides and solvents.
Certain medications: The medications used to treat cancer (chemotherapy) can cause neuropathy. In addition, anticonvulsant agents (medications used to reduce seizures) and even some medications prescribed to treat heart and blood pressure can cause peripheral neuropathy. In most cases, when these medications are discontinued or dosages are adjusted, the neuropathy resolves.
Disorders of the bone marrow: Peripheral neuropathy may also be caused by lymphoma, disorders that include abnormal protein in the blood, some forms of bone cancer, and amyloidosis (a disorder where amyloid, an abnormal protein that is usually produced in your bone marrow builds up in any tissue or organ).
Other diseases: These could include connective tissue disorders, liver disease, kidney disease, liver disease, and an underactive thyroid (hypothyroidism), vasculitis.
Alcoholism: Heavy alcohol consumption is a common cause of peripheral neuropathy. Chronic alcohol abuse often leads to certain nutritional deficiencies (particularly thiamine, B 12, and folate) that are linked to neuropathy. Damage may not be reversible but if the person stops drinking alcohol, the symptoms may lessen.

Back to top

What are the symptoms of peripheral neuropathy?

Symptoms of peripheral neuropathy may be experienced over a period of days, weeks, or years. They can be acute or chronic. In acute neuropathies, the symptoms will appear suddenly, rapidly progress, and resolve slowly as damaged nerves heal. In chronic forms of neuropathy, the symptoms often begin subtly and progress slowly. Some people may have periods of little symptomatic activity (remissions) followed by periods of increased symptoms (flares). Others may reach a stage where symptoms stay the same for many months or even years. Many chronic neuropathies worsen over time. Although peripheral neuropathy may be potentially debilitating, very few forms are fatal.

The specific symptoms of peripheral neuropathy will vary depending on whether motor, sensory, or autonomic nerves are damaged. These are some of the most common symptoms:
Tingling in hands and/or feet
Pain described as sharp, stabbing or burning
Loss of balance
Numbness in hands and/or feet
Heavy feeling in the arms and/or legs, sometimes described as feeling like your legs or arms “lock” in place
The feeling of wearing tight gloves or socks when you are not
Buzzing, vibrating or shocking sensation in muscles

Often the symptoms are symmetrical involving both hands and/or both feet. Because these symptoms occur in areas covered by gloves or stockings, peripheral neuropathy is often described as having a ‘glove and stocking’ symptom distribution. In many cases these symptoms improve with treatment especially if the underlying cause or condition is treatable.
Here are the symptoms that might be experienced when the different types of nerves are involved:

Motor nerve damage symptoms: The motor nerves control voluntary movement of muscles such as those used for walking, grasping things or talking. If these motor nerves are damaged, the following symptoms might occur:
Muscle weakness
Cramping
Decreased motor skills
Atrophy (shrinking) of the muscles
Twitching
Cramping
Slower reflexes

Sensory nerve damage symptoms: The sensory nerves have a broad range of sensory functions. Any damage to these nerves might cause a person to experience these symptoms:
Decreased sensations of touch. This can lead to not experiencing the pain from a cut or injury, or the feeling of wearing gloves or stocking when they are not.
A loss of ‘sense of position’ which can make coordinating complex movements like walking or buttoning a shirt very difficult. Balance might also be affected.
Difficulty in transmitting temperature sensations which could lead to burns. This loss of pain sensation can be a very serious problem for those suffering from diabetes and may contribute to a high rate of lower limb amputations among this group.
Increased sensation of pain is often a debilitating symptom of neuropathy. Instead of numbness, it can produce the opposite effect of an increased sensation of pain or feeling severe pain from stimuli that would normally be painless. It can severely affect quality of life, ability to sleep, emotional well-being, and the ability to work.

Autonomic nerve damage symptoms: If the autonomic nerves are involved, nearly every organ can be affected. The autonomic nerves control the functions of the body that happen automatically. Autonomic neuropathy can have symptoms that affect the loss of control of some of these functions. Symptoms may include:
Problems with heart rate
Difficulty with the body’s ability to regulate blood pressure which may cause dizziness or light-headedness
Problems with digestion (this may include diarrhea, or constipation)
Loss of bladder control
Inability to sweat normally which could lead to heat intolerance or overheating
Difficulty eating or swallowing

Seek medical care right away if you notice unusual pain, weakness or tingling in your hands or feet. Early diagnosis and treatment offer the best chance for preventing further damage to your peripheral nerves and controlling your symptoms. Back to top


How is it diagnosed?

Peripheral neuropathy is not a single disease, but rather describes damage to the nerves that produces varying symptoms. Because there are many potential causes for peripheral neuropathy, your doctor will need to examine where the nerve damage is in your body and attempt to determine what may be causing it. A neurologist is typically the type of doctor who will diagnose and treat neuropathy.

A diagnosis of peripheral neuropathy usually requires: 
 
Complete medical history: Your physician will first review your medical history, this will include discussions of any current or past medical conditions, your lifestyle, any exposure to toxins, your drinking habits, and any family history of nervous symptom diseases.
Physical exam
Neurological exam: Your physician will check your reflexes, muscle tone and strength, ability to feel sensations, coordination and posture.

Blood tests: Blood tests can detect vitamin deficiencies, liver or kidney dysfunction, diabetes, other metabolic disorders, and/or any signs of abnormal immune system activity
Diagnostic and imaging tests: This may include CT or MRI scans to show muscle quality and size, look for tumors, herniated discs or any other abnormality that might be causing your symptoms. Electromyography involves inserting a fine needle into a muscle to record electrical activity when muscles are at rest and when they contract. This can determine if your symptoms are being caused by muscle or nerve damage.
Nerve biopsy: This is where a small portion of a nerve is examined to determine the cause of your specific nerve damage.
Skin biopsy: A skin biopsy would be taken to observe the number of nerve endings in the skin. A reduction of nerve endings can signal neuropathy.
Other tests to analyze nerve function: Sweat tests to record how your body sweats, autonomic reflex screen test that will record how the autonomic nerve fibers are functioning, and other sensory tests to indicate how you feel touch, temperature changes, and vibrations.

If your lab and other diagnostic tests do not indicate any underlying condition, your doctor may recommend ‘watchful’ waiting to see if your neuropathy symptoms improve. If either exposure to toxins or alcohol consumption are the suspected causes of your condition, your doctor will recommend avoiding those substances to see if your symptoms improve before prescribing any medications or developing a treatment protocol. Back to top

How is it treated?

Peripheral neuropathy can be very uncomfortable and debilitating. Fortunately, treatment can be very helpful in the management of neuropathy symptoms. But before any treatment can begin, the most important step is to determine the underlying cause of the neuropathy to plan the correct course of treatment.

Some of the treatments for peripheral neuropathy may include:
Medications
Over-the-counter or non-prescription pain relievers: Over-the-counter pain medications such as nonsteroidal anti-inflammatory drugs (NSAIDs), including acetaminophen, ibuprofen, aspirin, etc. can be very helpful in relieving mild or moderate symptoms. For more-severe symptoms, your doctor may recommend prescription painkillers. Because these drugs can affect your liver or stomach function, it is very important to avoid using them for an extended period of time, especially if you regularly drink alcohol.
Prescription medications: Medications containing opioids can lead to dependence and addiction and are therefore generally prescribed only when other treatments fail. These drugs can include tramadol, oxycodone, conzip and others, COX-2 inhibitors, etc.
Steroid Injections: Corticosteroid injections can help with pain and inflammation
Anti-seizure medications: Medications developed to treat epilepsy may also relieve nerve pain. These medications can may cause side effects that include drowsiness and dizziness.
Capsaicin: Capsaicin is a substance naturally in hot peppers and can cause modest improvements in peripheral neuropathy symptoms. Doctors may suggest you use this cream with other treatments. However, some people can’t tolerate it and side effects such as skin burning and irritation may occur (these often lessen over time). Topical lidocaine, an anesthetic agent might also be prescribed for localized chronic neuropathic pain such as pain from the shingles virus. Their helpfulness in the treatment of diffuse chronic diabetic neuropathy is limited.
Antidepressants: Certain antidepressants have been shown to interfere with the chemical processes in the brain and spinal cord that cause the body to feel pain. These medications may include tricyclic antidepressants, such as amitriptyline, doxepin and nortriptyline (Pamelor).
Immunosuppressant medications: Medications to reduce the immune system’s reaction, such as prednisone, cyclosporine (Neoral, Sandimmune, others), mycophenolate mofetil (CellCept) and azathioprine (Azasan, Imuran), may also help people with peripheral neuropathy associated with autoimmune conditions such as [lupus] and [RA].
Other medications: Pregabalin (Lyrica) is a medication that is used for the treatment of postherpetic neuralgia (postherpetic neuralgia is a complication of shingles) and diabetic peripheral neuropathy. Duloxetine (Cymbalta) has been approved for use in the treatment of diabetic peripheral neuropathy. 

Therapies

Various therapies and procedures may help ease symptoms of peripheral neuropathy.
Intravenous immunoglobulin and plasma exchange: This treatment is also very common in the treatment of chronic inflammatory demyelinating polyneuropathy (a disorder characterized by progressive weakness and impaired sensory function in the legs and arms) and other inflammatory neuropathy. In immune globulin therapy, you receive high levels of proteins that work as antibodies. This helps to suppress immune system activity. Plasma exchange (called plasmapherisis) involves removing your blood and then removing antibodies and other proteins from the blood. The blood is then returned to your body.
Transcutaneous electrical nerve stimulation (TENS): TENS is a non-invasive intervention used for pain relief for a range of conditions, and a number of studies have described its use for neuropathic pain. In TENS, varying currents of gentle electrical current is delivered through adhesive electrodes placed on the skin. It is recommended that TENS should be applied for 30 minutes daily for about one month.
Physical therapy: Physical therapy can help improve your movements and counteract muscle weakness. Assistive medical devices such as canes, walkers, hand/foot braces might also be needed and helpful for those with mobility issues related to neuropathy.
Surgery: If pressure on the nerves is being caused by tumors for example, surgical intervention might be required and recommended to reduce the pressure. In carpal tunnel, where there is typically injury to a single nerve, surgery may be an effective solution. Some surgical procedures reduce pain by destroying the nerve when other treatments have failed to provide relief. Typically, diabetic neuropathy is not treated with surgical intervention.
Nerve block: A nerve block is an injection of anesthetics directly into the nerves.

Many treatments can bring relief to neuropathic symptoms and can help you to return to your regular activities. Often, a combination of lifestyle adjustments, treatments and therapies may work best. Back to top

Alternative treatments and self-care options

Complementary and alternative treatments have been shown to provide relief of peripheral neuropathy symptoms. The following therapies have shown some promise despite the fact that researchers have not studied these techniques as thoroughly as they have most traditional pharmaceutical medications. Some of these complementary and alternative treatments may include:
Fish oil supplements:These supplements, which contain omega-3 fatty acids, may reduce inflammation, improve blood flow and improve neuropathy symptoms in people with diabetes. Check with your doctor before taking fish oil supplements if you’re taking anti-clotting medications.
Herbs: Certain herbs, such as evening primrose oil, may help reduce neuropathy pain in people with diabetes. Some herbs may interact with medications or make some medications less effective, so please discuss any herbs or supplements that you are considering adding to your diet with your doctor.
Acupuncture: Acupuncture, which involves inserting thin needles into various points on your body, may reduce peripheral neuropathy symptoms. Multiple sessions might be required before any significant symptom improvement is noticed. Always be sure find a certified acupuncture specialist using sterile needles.
Chiropractic care: This can include massage, muscle stimulation, ultrasound therapy and manipulation.
Massage
Alpha-lipoic acid: This antioxidant has been used as a treatment to help reduce symptoms of peripheral neuropathy in Europe for years. Blood sugar levels may be affected by this antioxidant, so please discuss using alpha-lipoic acid with your physician. Other side effects could include skin rash and stomach upset.
Amino acids: In people who have undergone chemotherapy and in people with diabetes, amino acids, such as acetyl-L-carnitine, may help improve peripheral neuropathy. Side effects may include nausea and/or vomiting. 

Some suggestions to help you self-manage peripheral neuropathy

Quit smoking: Cigarette smoking can affect circulation by constricting the vessels that supply nutrients to the peripheral nerves, increasing the risk of foot problems and other neuropathy complications.
Exercise: Ask your doctor about starting an exercise routine. Regular gentle exercise, such as walking, or swimming may reduce neuropathy pain, control cramping, improve your muscle strength, prevent the muscles from atrophy, and help control blood sugar levels. Yoga and tai chi might also help.
Eat a balanced diet: Healthy eating is especially important to ensure that you get essential vitamins and minerals. Emphasize low-fat meats and dairy products and include lots of fruits, vegetables and whole grains in your diet. Protect against vitamin B-12 deficiency by eating meats, fish, eggs, low-fat dairy foods and fortified cereals. If you’re vegetarian or vegan, fortified cereals are a good source of vitamin B-12, but also talk to your doctor about B-12 supplements. Speak with your doctor about using various dietary strategies to improve gastrointestinal symptoms from neuropathy.
Avoid excessive alcohol: Alcohol may worsen peripheral neuropathy.
Meditation
Monitor your blood glucose levels: Monitoring your blood glucose levels, if you have diabetes, will help keep your blood glucose under control and may even help improve your symptoms of neuropathy.
Take good care of your feet, especially if you have diabetes: Wash and inspect your feet daily for any injuries, blisters, cuts or calluses. Help to keep the skin moist with lotion. Timely treatment of injuries can help prevent permanent damage. Wearing soft, loose cotton socks and shoes with padded inserts may also help. To keep bedcovers off of hot or sensitive feet and provide a better night’s sleep, you may wish to use a semicircular hoop. These can be found in medical supply stores. 

Making Your Home Safe

If you have peripheral neuropathy, you are potentially at greater risk for accidents in the home due to muscle weakness, loss of balance, decreased sensitivity to sensations of pain, etc. Here are few things to keep in mind to make yourself safer in your home and decrease your chances of injury:
Protect your feet by always wearing shoes.
Things laying around on the floor can be a tripping hazard, so try to keep your floor clear.
Use your elbow, not your hand or foot to check the temperature of your bath or dishwater.
Installing handrails in your bathtub or shower, as well as anti-slip bath mats can reduce the odds of falling or slipping and injuring yourself.
For those whose work involves sitting for long periods of time, make the effort to get up and move around a few times each hour to improve circulation. It is important to not stay in one position for too long.

Back to top

In Conclusion

Peripheral neuropathy, while it cannot be cured, can most likely be well-managed if it is caused by a treatable underlying condition. The best way to prevent peripheral neuropathy is to manage those conditions that may put you at risk, such as diabetes, alcoholism or rheumatoid arthritis. Even if you have a family history of this disorder, you may be able to prevent its onset by taking the following precautions to lower your risk:
Being aware of any toxins that you might be exposed to at work or at school
Protecting your feet during sports, especially those that involve kicking
Never inhaling toxins like glue to get high
Managing your alcohol intake
Avoiding tobacco and smoking
Maintaining a healthy weight and lifestyle
Avoiding factors that may cause nerve damage such as repetitive motions, staying in one position for long periods of time, staying in cramped positions

The goal of treatment and therapy for peripheral neuropathy is targeted at treating the underlying disease and improving the symptoms with the right combinations of medications and therapies. Finding a knowledgeable and experienced neurologist who listens and supports you, and makes you feel more comfortable can greatly improve your quality of life. It is very important to find a neurologist as soon as you notice any of the above-listed symptoms. This will provide the opportunity for you to receive the necessary treatment that can stop the disease before it has a chance to cause permanent damage help to ensure your best possible health.

Neuropathy, fibromyalgia, lupus, rheumatoid arthritis and many other conditions are considered invisible illnesses meaning they cannot be seen, but they exist. Being misunderstood and judged are two of the most common frustrations with those suffering from invisible illnesses. In addition to educating yourself about peripheral neuropathy, you might find it helpful to provide your family, friends and co-workers with information as well. Sharing this blog might be a good start! We want you to know that you are not alone as you learn to navigate living with a chronic and invisible illness. Our Facebook community is a great place to share and get great support from others who know exactly what you are experiencing and our online support groups are also a great way to get connected. We are here for you.
Back to top



Article by : Karrie Sundbom Karrie is the Digital Marketing Manager at Molly's Fund and responsible for innovating content for all of Molly's Funds online communications, creating memes and graphics, writing the MFFL Newsletter and main lupus blogs, as well as developing and managing the content for all of our social media platforms. Connect with Karrie on LinkedIn and Google+ .

http://www.mollysfund.org/2015/02/peripheral-neuropathy/

The Shoe Problem For Neuropathy Sufferers

Today's post from pamspaulding.net (see link below) is a personal story of a woman trying to find the best shoes to suit her neuropathy symptoms. Many people will identify with her problems and although the suggestions are of American shoe brands, it does highlight the fact that we need to find footwear that is both reasonably stylish and comfortable and supportive. That's not an easy task!

When you have neuropathy-damaged feet, good (cute) shoes are hard to find. 
Posted by Pam Spaulding Saturday, June 8, 2013

 The stereotype is that lesbians wear "comfortable" shoes, as in unfashionable, or maybe work boots, I have no idea.

 Anyway, this lesbian has serious neuropathy in both feet. I've had insulin-dependent diabetes for 30 years, and thankfully my eyes and kidneys -- usual targets of long-term damage -- are fine, unfortunately the feet are what took the damage. My blood sugars have been in good control, but it's hard not to have some long-term effects having diabetes for this long. BTW, it runs on both sides of my family -- both of my parents had adult-onset but were not obese. My brother is fine; I seemed to be the one to get all of the horrid metabolic and immune disorders passed down. Even my RA, according to my rheumatologist, was spawned through the genes; my mom had sarcoidosis, which is in the same auto-immune family.

 Anyway, it's hard to describe what neuropathic pain feels like -- it's simultaneously numbness paired with extreme sensitivity at times to the touch, such as feeling like you're walking on hot coals, or someone is stabbing you with little knives on the soles of your feet. The duality of this is both frustrating and annoying because it can ramp up at any time. The worst-case scenario is an attack of it at night -- I've had pain so bad that even having the sheet touch my feet under the covers was excruciating.

 On the other hand, my feet are nearly completely numb to hot or cold, which can be dangerous. Burning hot water feels only warm on them; ice barely registers as cold. The numb aspect also makes it easy to slip in the shower, since my feet don't have the correct sensation to grip the wet floor well. I have to have bath mats all over the floor to make it to my slippers.

 One of the few topical things that help is capsaicin, derived from hot peppers. Mostly this is used by folks with osteoarthritis. In treating neuropathy, the heat sensation generated by it cancels out/breaks up the neuropathic signals causing the pain. Kate tried using it on a sore muscle and she couldn't bear the burning sensation; I barely feel anything warm on my feet, but after about a half-hour, some of the worst burning subsides and I'm able to finally sleep.

 But back to shoes... 

 Almost all my old shoes -- nice dress shoes, sandals -- had to be tossed out over the last couple of years because they either 1) hurt my feet by causing neuro-pain, or 2) didn't provide enough shock absorption to prevent knee and hip pain that I have from RA. What's left to wear? Well, lots of styles that look like Grandma Shoes. At this point, the only brand I trust to be comfortable are Easy Spirit's Athletic family. At least they come in all sorts of cool colors and styles.

 I took a risk on one shoe that looked kind of cool -- the Naturalizer BZees Mary Jane (right). While they aren't dress shoes or sneakers, they fall into middle ground for me. I'll wear these to work or out on the weekend. I've learned that comfort comes before style at this point. It's really not a choice.

 One of the brands that up until this about a year ago that I could reliably trust were Jambus and J-41s. I wore one pair last week and boy did I pay for it. They seemed comfy enough -- they have memory foam insoles -- but the next day my left knee and hip hurt so bad that I was limping for two days. I had to fall back on my trusty Easy Spirit Mary Janes to get enough support and shock absorption. I was crestfallen. I love those J-41s. I wanted to make a bargain with myself that I can still wear them in some limited way...oy.


 http://www.pamspaulding.net/2013/06/when-you-have-neuropathy-damaged-feet.html

NEW TREATMENT FOR COMMON ALLERGIES

Researchers have successfully tested treatments for people with allergies to grasses and to dust mites.

There are two treatments, one for grass allergy, which is commonly known as hay fever, and the other for dust mite allergy. They are expected to be helpful for the millions of people who, as a reaction to grass pollen or the tiny bugs that live in house dust, have sneezing, itching eyes and a running nose that often significantly impacts their productivity at school or work.

The two studies were conducted by Adiga Life Sciences, a joint venture between McMaster University and Circassia, a U.K. based biotechnology company, and was supported by St. Joseph's Healthcare Hamilton.

It is estimated that together, these allergens are responsible for more than 50% of allergic respiratory disease. Between 15 and 25 per cent of the population in North America and Europe is sensitive to pollen from different grass species. One in four people is sensitized to house dust mites, more than any other common allergen, which includes millions of people in these regions.

The treatments are from a new class of therapy, known as 'synthetic peptide immuno-regulatory epitopes', or SPIREs.

The 280 patients in the phase two clinical trial for the grass allergy treatment recorded their allergy symptoms while exposed to grass pollen in a controlled environment, both before treatment and at the end of the hay fever season. Study participants received one of three treatment regimens over three months, completed prior to the beginning of the pollen season. Those who had the optimal short course of therapy had significantly improved symptoms at the end of the season, compared to those who had a placebo. This treatment, called Grass-SPIRE, was well tolerated.

During the clinical trial for the dust mite treatment, 172 patients who received four doses of the treatment over 12 weeks had significantly improved allergy symptoms a year after the start of treatment, compared to patients who received a placebo. The treatment, called HDM-SPIRE, was well tolerated.

"This result is an important validation of the approach we are taking to treat allergic diseases," said Mark Larché, who led the design of the treatments. "Positive results, first with a cat allergy therapy and now with house dust mite and grass allergy treatments, suggest that this approach may be used for many common allergies."

Larché is a professor of medicine of the Michael G. DeGroote School of Medicine at McMaster and member of the Firestone Institute for Respiratory Health at St. Joseph's Healthcare Hamilton.

Hay fever is a seasonal response to many different grass pollens which are heaviest in the spring and fall.

Dust mites are close relatives of spiders and ticks and are too small to see without a microscope. They eat skin cells shed by people, and they thrive in warm, humid environments. Upholstered furniture, bedding and carpeting provide an ideal environment for dust mites

Coping With Chronic Pain Symptoms Family And Friends

Today's valuable post from princessinthetower.org (see link below) follows on from yesterday's article about learning to cope with the pressures of chronic pain and discomfort. This applies to neuropathy patients too - don't underestimate your condition! The article comes from a different angle to that of yesterday and is equally lengthy but is equally useful in that you can choose from the pieces of advice given, according to your own situation.

How to Cope When Chronic Pain Affects Friends, Family and Social Life
March 14, 2015 by Princess 

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

We want to be treated as the same person we have always been. #chronicillness

Chronic Pain and Socialising

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection. “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Planning a social life around #chronicpain is frustrating for everyone involved.

Never Knowing How We’ll Feel

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you. 

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

Seeing a loved-one means the entire day is built around that event. #chronicpain

Evaluating Everything

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Living in #chronicpain involves a constant evaluation of the impact activities have on the pain.

Not Knowing How to Act Around Pain

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships. 

Sensory Overwhelm and Brain Fog

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.” 

Talking About Our Pain

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak. 

Exceeding Limitations

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family. 

Unpredictable Symptoms

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

We don’t want pity but understanding. #chronicpain #chronicillness

Compassion Fatigue

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear. 

Self-Compassion

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

“If your #compassion does not include yourself, it is incomplete.” Jack Kornfield #chronicpain

Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.” 

Finding Friends in the Spoonie Community

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/