Archive for the ‘Research’ Category

Made by me on someecards.com

Made by me on someecards.com

I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

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Just recieved this update from Chelsea Therapeutics and had to share!!!!! (Yes, I did include the Legal mumbo jumbo from their email announcement to protect and preserve CT’s rights and responsibilities).


NORTHERA Clinical Trial Data
Published in Neurology:

Data Supported FDA-Label for Patients with Symptomatic Neurogenic Orthostatic Hypotension

CHARLOTTE, N.C., June 19, 2014 — Chelsea Therapeutics International, Ltd. (Nasdaq: CHTP) today announced the publication in Neurology of its pivotal, Phase 3 study 301, a multicenter, multinational, double-blind, randomized, placebo-controlled, parallel-group study of NORTHERA (droxidopa) that details how NORTHERA demonstrated a statistically significant difference in efficacy compared to placebo for improving the symptoms of neurogenic orthostatic hypotension (NOH).

NORTHERA was approved by the U.S. Food and Drug Administration on February 18, 2014, for the treatment of orthostatic dizziness, lightheadedness, or the “feeling that you are about to black out” in adult patients with symptomatic neurogenic orthostatic hypotension caused by primary autonomic failure (Parkinson’s disease, multiple system atrophy, and pure autonomic failure), dopamine beta-hydroxylase deficiency, and non-diabetic autonomic neuropathy. Effectiveness beyond 2 weeks of treatment has not been demonstrated. The continued effectiveness of NORTHERA should be assessed periodically.

Data from pivotal study 301, published online today ahead of print in Neurology, was used to support the safety and efficacy of NORTHERA as part of its new drug application.

“Droxidopa, a norepinephrine prodrug, is the first treatment approved in 20 years for symptomatic neurogenic orthostatic hypotension, a syndrome characterized by blunted noradrenergic response to standing,” said lead author Horacio Kaufmann, M.D., Professor of Neurology and Medicine at New York University and Director of the Dysautonomia Center at NYU Langone Medical Center. “In a double-blind randomized trial, 7-day treatment with droxidopa was superior to placebo in relieving symptoms and was associated with an increase in standing systolic blood pressure.”

“Neurogenic orthostatic hypotension is a rare and debilitating condition associated with neurogenic disorders such as Parkinson’s Disease and multiple system atrophy, that is often overlooked and underdiagnosed,” said Joseph G. Oliveto, President and CEO of Chelsea. “The publication of our 301 study in Neurology, a highly respected medical journal, adds to the peer-reviewed literature on NOH and will help increase understanding of NOH among physicians.”

The trial examined the efficacy and safety of droxidopa versus placebo. The primary endpoint was the relative improvement in mean Orthostatic Hypotension Questionnaire (OHQ) composite score following 1 week of treatment. The OHQ is a validated, NOH-specific tool assessing symptom severity and symptom impact on daily activities as reported by patients. When evaluating the OHQ composite, it was found that droxidopa-treated patients improved by 0.90 units (p=0.003), compared to placebo.

The OHQ may be divided into two independently validated composite sub scores. The orthostatic hypotension symptom assessment composite (OHSA), which examines a variety of symptoms, and the orthostatic hypotension daily activities assessment composite (OHDAS), which examines a variety of symptom impacts. Improvement in the OHSA composite score favored droxidopa by 0.73 units (p=0.010). The largest improvement in an individual symptom item was recorded for item 1 (dizziness/lightheadedness) which favored droxidopa by 1.30 units (p<0.001). Improvement in OHDAS composite favored droxidopa by 1.06 units (p=0.003), with the largest individual item change recorded for "ability to conduct activities that require standing a long time" which favored droxidopa by 1.30 units (p=0.001)

A biologically relevant correlate for efficacy, the mean change in standing systolic blood pressure (BP) increased by 11.2 vs 3.9 mmHg (p<0.001). An important safety observation was the change in the mean supine systolic BP by 7.6 vs 0.8 mmHg (p<0.001) study. There were relatively few patients who experienced BP increases above180 mmHg: 4.9 percent of droxidopa and 2.5 percent of placebo recipients.

Overall, this short-term multicenter trial showed that droxidopa treatment was associated with significant improvement in multiple symptoms of NOH and of NOH impact on activities requiring standing or walking as well as an associated increase in standing systolic BP. Furthermore, these benefits were associated with an acceptable safety profile.

About Symptomatic Neurogenic Orthostatic Hypotension (NOH)

It is estimated that 80,000 to 150,000 patients suffer from symptomatic NOH in the U.S. Symptomatic NOH is a chronic disorder that is caused by an underlying neurogenic disorder, such as Parkinson's disease, multiple system atrophy or pure autonomic failure. Symptoms of NOH may include dizziness, lightheadedness, blurred vision, fatigue, poor concentration, and fainting episodes when a person assumes a standing position. These symptoms can severely limit a person's ability to perform routine daily activities that require standing or walking for both short and long periods of time.

About NORTHERATM (droxidopa)

NORTHERA is the first and only therapy approved by the FDA that demonstrates symptomatic benefit in adult patients with NOH caused by primary autonomic failure (Parkinson's disease, multiple system atrophy and pure autonomic failure), dopamine beta hydroxylase deficiency and non-diabetic autonomic neuropathy. NORTHERA is expected to be launched in the second half of 2014.

NORTHERA carries a boxed warning for supine hypertension. The most common adverse events experienced in controlled studies were headache, dizziness, nausea, hypertension and fatigue. Please see NORTHERA full Prescribing Information at http://www.chelseatherapeutics.com, and Important Safety Information below.

The NORTHERA approval was granted under the FDA's accelerated approval program, which allows for conditional approval of a medicine that fills a serious unmet medical need, provided additional confirmatory studies are conducted. The package insert indicates that effectiveness beyond two weeks of treatment has not yet been demonstrated; therefore the continued effectiveness of NORTHERA in patients should be assessed periodically. A multi-center, placebo-controlled, randomized study, which is designed with the goal of definitively establishing the durability of the clinical benefits of NORTHERA, has been preliminarily agreed to with the FDA.

IMPORTANT SAFETY INFORMATION

WARNING: SUPINE HYPERTENSION
See full prescribing information for complete boxed warning. Monitor supine blood pressure prior to and during treatment and more frequently when increasing doses. Elevating the head of the bed lessens the risk of supine hypertension, and blood pressure should be measured in this position. If supine hypertension cannot be managed by elevation of the head of the bed, reduce or discontinue NORTHERA.

CONTRAINDICATIONS
None

WARNINGS AND PRECAUTIONS
Supine Hypertension: NORTHERA therapy may cause or exacerbate supine hypertension in patients with NOH, which may increase cardiovascular risk if not well-managed.

Hyperpyrexia and Confusion: Postmarketing cases of a symptom complex resembling neuroleptic malignant syndrome (NMS) have been reported in Japan with NORTHERA use. Observe patients carefully when the dosage of NORTHERA is changed or when concomitant levodopa is reduced abruptly or discontinued, especially if the patient is receiving neuroleptics. NMS is an uncommon but life-threatening syndrome characterized by fever or hyperthermia, muscle rigidity, involuntary movements, altered consciousness, and mental status changes. The early diagnosis of this condition is important for the appropriate management of these patients.

Ischemic Heart Disease, Arrhythmias, and Congestive Heart Failure: NORTHERA therapy may exacerbate symptoms in patients with existing ischemic heart disease, arrhythmias, and congestive heart failure.

Allergic Reactions: This product contains FD+C Yellow No. 5 (tartrazine) which may cause allergic-type reactions (including bronchial asthma) in certain susceptible persons. Although the overall incidence of FD+C Yellow No. 5 (tartrazine) sensitivity in the general population is low, it is frequently seen in patients who also have aspirin hypersensitivity.

ADVERSE REACTIONS
The most common adverse reactions (greater than 5 percent) were headache, dizziness, nausea, hypertension, and fatigue.

DRUG INTERACTIONS
Administering NORTHERA in combination with other agents that increase blood pressure (e.g., norepinephrine, ephedrine, midodrine, and triptans) would be expected to increase the risk for supine hypertension; Dopa-decarboxylase inhibitors may require dose adjustments for NORTHERA.

USE IN SPECIAL POPULATIONS
Clinical experience with NORTHERA in patients with severe renal function impairment (GFR less than 30 mL/min) is limited; There are no adequate and well controlled trials of NORTHERA in pregnant women; Women who are nursing should choose nursing or NORTHERA; The safety and effectiveness of NORTHERA in pediatric patients have not been established; No overall differences in safety or effectiveness were observed between subjects aged 75 years and older, and younger subjects in clinical trials, but greater sensitivity of some older individuals cannot be ruled out.

About Chelsea Therapeutics

Chelsea Therapeutics (Nasdaq: CHTP) is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases, including central nervous system disorders. Chelsea acquired global development and commercialization rights to droxidopa (L-DOPS), or NORTHERA, from Dainippon Sumitomo Pharma Co., Ltd. in 2006, excluding Japan, Korea, China and Taiwan. For more information about the Company, visit http://www.chelseatherapeutics.com.

As previously announced, pursuant to the Agreement and Plan of Merger, dated as of May 7, 2014 (Merger Agreement), by and among Chelsea, H. Lundbeck A/S (Lundbeck), and Charlie Acquisition Corp., an indirect wholly owned subsidiary of Lundbeck (Acquisition Sub), Lundbeck has commenced a tender offer (Offer) to purchase all of the outstanding shares of Chelsea. Lundbeck and Acquisition Sub have filed a tender offer statement on Schedule TO (as amended, the Schedule TO), including an offer to purchase, a letter of transmittal and related documents, with the Securities and Exchange Commission (SEC), and Chelsea has filed a Solicitation/Recommendation Statement on Schedule 14D-9 (as amended, the Statement) with respect to the Offer. The Offer will only be made pursuant to the offer to purchase, the letter of transmittal and related documents filed as a part of the Schedule TO. Subject to Acquisition Sub's irrevocable acceptance for payment in the Offer of at least a majority of Chelsea's common stock outstanding on a fully diluted basis and to the satisfaction or waiver of certain other customary conditions, Acquisition Sub will merge with and into Chelsea (Merger) and, subject to certain exceptions, each Chelsea share not tendered in the Offer will be cancelled and converted into the right to receive in the Merger the same consideration per share paid in the Offer.

Safe Harbor/Forward-Looking Statements

The above information contains forward-looking statements, including without limitation statements regarding the planned completion of the Offer and the Merger.

Some of these forward-looking statements may contain words like "believe," "may," "could," "would," "might," "possible," "will," "should," "expect," "intend," "plan," "anticipate," or "continue," the negative of these words, or other terms of similar meaning or they may use future dates. These statements are subject to risks and uncertainties that could cause actual results and events to differ materially from those anticipated, including, but not limited to, risks and uncertainties related to: the timing of the transaction; diversion of the attention of Chelsea's management away from Chelsea's day-to-day business operations; the percentage of Chelsea's stockholders tendering their shares in the Offer; the possibility that competing offers will be made and the effects of provisions in the Merger Agreement that could discourage or make it difficult for competing offers to be made; the possibility that various closing conditions for the transaction may not be satisfied or waived, including that a governmental entity may prohibit, delay or refuse to grant approval for the consummation of the transaction; the effects of disruption caused by the transaction making it more difficult to maintain relationships with employees, collaborators, vendors and other business partners; stockholder litigation in connection with the transaction resulting in significant costs of defense, indemnification and liability; and other risks and uncertainties discussed in Chelsea's filings with the SEC, including the "Risk Factors" sections of Chelsea's Annual Report on Form 10-K for the year ended December 31, 2013 and Quarterly Report on Form 10-Q for the quarter ended March 31, 2014, as well as the Statement and the tender offer documents filed by Lundbeck and Acquisition Sub. Chelsea undertakes no obligation to update any forward-looking statements as a result of new information, future developments or otherwise, except as expressly required by law. All forward-looking statements in this document are qualified in their entirety by this cautionary statement.

CONTACTS:
Media:
David Connolly
LaVoieHealthScience
617.374.8800 ext 108
dconnolly@lavoiehealthscience.com
Investors:
David Pitts
Argot Partners
212-600-1902
david@argotpartners.com

To keep up-to-date on the subject in the medical field in which I have an interest, personal or professional, I subscribe to Medscape updates. I strongly encourage every ePatient or person that advocates for themselves or another should do the same, IMHO. It’s free and very worthwhile.

A shocking topic came through today and I HAVE to share it with everyone I possibly can.

Anyone that has been dismissed, treated in a less than human manner or completely ignored by a doctor they are looking to for help may second-guess their initial feeling: “Why does that doc hate me so much?”

You discuss it with your spouse, your friends, your fellow “zebras.”

Most tell you, no, doctors don’t hate their patients-s/he must have been having a bad day…or..YOU are reading too much into the interaction.

Read the Medscape article  HERE:

It is titled, “Medscape Business of Medicine Top Complaints Posted on Doc-Rating Websites,” by Shelly Reese.

Then, please read the response from a doctor to the article, a Dr. Barbara Lawrence, copied this directly from the plethora of comments, about 25% of them similar in tone (OMG – these are the people we are trusting with  our LIVES…) below:

“This reminds me of a large, complex doctor evaluation done by the Feds on Medicare patients. After evaluating multiple categories it turned out what seniors valued most highly in selecting a doctor/practice was the number of parking spaces and the waiting room appearance.

I don’t mind patients being sensitive to my bedside manner, my staff’s courtesy or follow-up phone calls. But really , I’m not in the business of customer service because I’m a medical professional. I can’t guarantee that patients will be seen on time due to the unpredictability of what comes through the door.

I could care less if the patient thinks they were correctly diagnosed or treated because we aren’t peers in internal medicine. Just because Readers Digest says being tired is a sign of lupus doesn’t mean you have it.

Patients may want to be co-partners in their care but they suffer from the extreme disadvantages of being poorly informed/misinformed, anxiety-driven, making judgments based on anecdotal information or TV ads, and no long term clinical practice experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine. experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine.”

(Emphasis added)

So, how dies THAT make you feel??

Vindicated – you are not crazy, overreacting, etc….?

Mad as hell?

Disgusted?

Do you feel sad for her patients?

Do you wonder how many of them were misdiagnosed, ignored, or treated harshly by her in some way?

I REALLY would love to hear your reactions!

My opinion:

A doctor-patient relationship should be one of mutual respect. If a doctor wants the respect and admiration of patients, treat them likewise. And for all concerned, they should stay abreast of the latest medical advances and studies in their specialty.

I wrote a lengthy reply to her nastiness , but I won’t include it here unless my readers ask. (I did say this in support of all us zebras: “It will confirm what all of us hard-to-diagnose patients have experienced- that docs with hatred towards us DO exist.

How sad.”

(Gee, I wonder how Connie Chung feels about being called out in this? Yikes.)

Comes from THIS article....

Graphic comes from THIS article...what a coincidence!

I had my genome sequenced primarily for health reasons in late 2013.
Not only did I get some great information that confirmed what I already knew and informed me of my relative risks for other health conditions, based on my own genetic ancestry, I learned that I am 44% Ashkenazi, an important category of people who are prone to medical oddities and have been studied in-depth for this reason. (This proves that you can’t believe everything Mom tells you sometimes..I was supposedly Italian and Scottish/English. Whoops.)

I chose to have my testing done by 23andme, primarily because of their reputation, their ongoing independent research into many genetic issues, and the fact that they will continue to update your results for ten (10) years based upon any research. There were many choices available and many levels of cost. It is very disheartening to have had the FDA suspend the medical genetic testing portion of their operation for what I personally believe to be political and capitalistic – they are not getting any money from the testing, nor is any income being generated for the FDA’s strongest lobbying groups. But, I do not wish to discuss the politics of the FDA here. Unaligned DNA sequences

Using my genetic raw data, I used several online services to re-analyze the results I had received from 23andme. Many of these databases address or define particular issues that 23andme chooses not to tell their customers. Perhaps this is due to space limitations, or the mere fact they don’t want to overwhelm lay persons with information that may not make much sense to them. I found that Promethease was the most comprehensive analysis tool available. (If you choose NOT to download the analysis tool, the reports (yes plural) will cost you $5. I downloaded the program so I did not have to pay for my information).

If you are a regular reader of my blog, you know that I have a lot of uncommon conditions, and that I have been misdiagnosed and/or dismissed by MANy physicians over the past 30 years. I have had all sorts of strange and “rarely reported” side effects to many medications. Now, thanks to 23andme and Promethease, and my subsequent research (jump-started by the links in the Promethease report), I now know WHY.

So, WHY?

My results show a multitude of genetic mutations in one of the genes known as the “multi-drug resistance”  (MDR) genes –  ABCB1 (“a gene that is the member of the superfamily of ATP-binding cassette (ABC) transporters. ABC proteins transport various molecules across extra- and intra-cellular membranes. ABC genes are divided into seven distinct subfamilies (ABC1, MDR/TAP, MRP, ALD, OABP, GCN20, White). This protein is a member of the MDR/TAP subfamily. Members of the MDR/TAP subfamily are involved in multi-drug resistance. The protein encoded by this gene is an ATP-dependent drug efflux pump for xenobiotic compounds with broad substrate specificity. It is responsible for decreased drug accumulation in multidrug-resistant cells and often mediates the development of resistance to anticancer drugs. This protein also functions as a transporter in the blood-brain barrier.”   http://ghr.nlm.nih.gov/gene/ABCB1.)

This information coincides with the strange side effects and non-response issues I have had for decades with certain drugs. It is welcome confirmation that something is DEFINITELY different about me…it is vindication….documentary evidence…and proof of my own hypothesis (bolstered by the occasional physician) that “something wasn’t right with me” since I was 12 yrs old.  Even better and more important – it is based on HARD science – using my own genome!!! Not just supposition based on some papers or articles I heard about on Dr. Oz or WebMD, or anecdotal ramblings I try to get my doctors to “hear.”

I recently had a serious adverse drug event that could have been prevented had I known about my ABCB1 mutations before I started the medication. When I informed my doctor, the response I received was a copy of a 3 yr old opinion paper written by a “for doctors-only” research service dismissing most genetic testing by commercial entities as inaccurate and unreliable – despite the fact that these companies use the EXACT SAME proprietary, science-industry-produced tools and assays as any hospital, medical lab or university researcher would use. The article referred to genetic testing initiated by patients as part of the “personalized medicine” fad and gave strong advice to their target audience NOT to rely on any of the results. (Unfortunately, I do not have access to the service that publishes the article, therefore I cannot give you a link to it. However, if you contact me, I can provide you with a PDF.)

While I agree that testing in the PAST was if-fy, based on which lab was utilized, I vehemently disagree with this article’s continued dissemination to physicians based simply on the harm that it could cause to patients.

MDR mutations have HUGE implications in drug metabolism. If drugs that do not cross tissue barriers due to the lack of proteins in a person’s body that are supposed to carry drugs across membranes which they need to cross to work, they can accumulate in organs and body tissues and cause problems. I’ve had that happen.

Since I received the 2011 article from my doctor putting-down of “personalized testing platforms” such as 23andme, I have done some research and found MANY online resources that re-analyze the results of the 23andme testing (or DNA raw data from anywhere) are now available on the internet. I imagine this was in response to the persistent questioning of results by healthcare professionals.

Also, it should be noted that as inferred in the anti- personalized medicine article, 23andme doesn’t use their own geneotyping materials, but in fact uses commercially available arrays – just like the “real doctors” use! They state this clearly in their response to the FDA’s accusations about a month ago. I count at no less, 25 commercially available microarray cards that are manufactured for the purpose of determine multi-drug resistance available (just an example from ONE company), then it must be a lot more standardized than the author of the article is aware.

So, why did I mention DOGS in the title of his post?

Check out the link from this pic!

Check out the link for this pic! You can’t escape the uses of DNA!!

Turns out that MDR testing for purebreds is a common thing, as is evidenced by the multitude of tests available  – this is one company offers MANY. Just Google “canine ABCB1 testing” for a plethora of research articles on canine testing, and companies that specialize in such testing. (Perhaps I should go see a vet….)

I now fear seeing any more specialists here in Boston, where microspecialites seem to be norm at these training hospitals. I fear seeing a “personalized medicine” hater, or someone who despises people like me – ePatients that have the knowledge and ability to research issues on our own, similar to a certain specialist I saw last year that was agitated that I had possession of my test reports and medical information. Gee, if he know I had my genome sequenced and had all this information about my DNA – he would blow a gasket!!

So, why don’t I see a geneticist, you may be wondering…My insurance company will not pay for me to see a general geneticist – a cancer geneticist – yes – in fact, “strongly recommended” for people with my breast cancer family history; or, a cardiac geneticist – sure, no problem! The insurance company’s policy conveys that it doesn’t think that any other genetic abnormalities are important enough to explore to improve or save their patients’ lives, or even save them money in finding a treatment for their disorders.

A multitude of papers address this topic (not “personalized medicine” – but ABCB1 and other P-gp mutations) – in detail – be it for cancer drugs or antidepressants. Most often, it is applied in cancer cases, as certain cancers show affinity/resistance for one drug or another, based on P-gp status.

The man who wrote the most cited paper regarding the specific SNPs responsible for genetic-based responsiveness to several different antidepressants is Manfred Ur, MD at the Max Planck Institute of Psychiatry. He has been researching and documenting these polymorphisms in well-respected peer-reviewed journals since 2000. His webpage is a great place to start your research.

Here are a few of the most informative research papers I have found on the topic of ABCB1 mutations. Don’t forget to check out the references at the end of the article – they are a treasure-trove of additional information, and may lead you to exactly what you are looking for, if the referencing paper didn’t hit home for you.

ABCB1 – Genetics Home Reference

Great Tutorials about Pharamcogenomics

Polymorphisms in the Drug Transporter Gene Predicts Antidepressant Response

The ABCB1 Gene and Antidepressant Response

Ethnicity-related Polymorphisms and the ABCB1 Gene

Pharmacogenetics of Antidepressant Response – An Update

I just spent three hours researching the advances in pain neuromodulation technology, suitable for someone with my condition. I had a conversation with my anesthesiologist that had left me “hopeful.” (I will live to regret feeling this way. Just wait…) Based on what I found, perhaps they’ll have something suitable for my condition 10 to 20 years after BItcoin becomes the World currency – not in 6 months, and not in a couple of years like he had mentioned.

So much for “hope.” How dare I think positively about the possibility that there might be a treatment out there that would be helpful for me.

As I have always said, “there’s no room in medicine for hope or unicorns.”

I have reached the end of my rope.

These sleepless nights are complete hell for both me and my husband.

My pain doctor tells me that there are no options left for me – in the United States anyway, until the U.S. decides to catch up with the needs of patients like me, as have other countries in other parts of the world the recognize that patients with chronic pain need pain relief – other than drugs – so we can sleep.

I’ve tried every intervention, Eastern, Western, New Age, etc., all to no avail. I’ve had six surgeries just for this pain issue. And I am STILL left with miserable pain that keeps me up at night, that now, due to the fact I can only lay on one side, my L rotator cuff that has already been repaired twice is re-torn.

I am left without options. Basically, I am a useless pain generator that takes up space in my tiny condo and hurt myself somehow whenever I try to do more than walk across the room (i.e., laundry, vacuuming, emptying dishwasher, etc.).

I’m not even going to mention the other chronic health issues I have to deal with. Compared to this pain issue, those are soooo secondary.

Please don’t tell me to try this exercise or that therapy or meditate or pray or try yoga etc. I’ve done all that. Remember, it’s been almost 17 years now that I’ve been dealing with this. And it’s been almost 17 years that I’ve been misdiagnosed by doctors. I have FIVE pages of “interventions I have tried…and yes, I have seen a Shaman and had my Chakras cleaned. And had prolotherapy…I just know someone wanted to throw that one out there.

Most people are “new” to the chronic pain community…they have suffered only a few months or a few years. I’ve lost who I was  – my life, my career, my motivation, my friends – all because of being a person in chronic pain. Try 17 years of pain….multiple surgeries….countless treatments…and still being in pain.

And alone. No one wants to be friends with a person that has chronic health issues.

No one wants to help a person in chronic health issues,

[I’m not bringing up all the misdiagnoses that occurred since I was 12 years old…That’s a whole other set of stories for another time.]

My point writing this blog entry?

To illustrate that all the good intentions, the finding of promising research, and having a great PCP, really doesn’t make a difference when there is absolutely nothing out there, short of suicide, that’s going to take away this pain.

Those of you with chronic illnesses know that finding a support system is not easy. I don’t have a support system. Literally – well, other than my husband, that can take me to an OCCASIONAL pain management appointment. Since he is not allowed to take days off from his job without repercussions, he can only do this on work holidays. This means that the treatments that I’m able to receive are few and far between, and not in line with the recommendations of the doctor.

Nope, and there’s not a single soul on the face of the planet, that has the time, inclination, ability, desire or compassion to help me get to these appointments that I desperately need to go to to get the help I need.

I know. I had the pleasure of being humiliated when I’ve asked and watched them struggle to come up with excuses as to why they “can’t.”

Perhaps is just because I live in Massachusetts, and that’s the way people are here – too busy and too self-involved to help anyone else that’s in need.

My suggested solution?

How about a service, something like “ZipCar,” in which  you can “rent” a “responsible person” to accompany you to these appointments and drive you safely home after your procedure????

Hmmm… I wonder if TaskRabbit offers a similar service…I know that works on a bidding system. …

[Yes, I know there are medical transport services available now, but they charge exorbitantly high prices (minimum $250 PLUS mileage!!!!), and that is not exactly budget-friendly someone on disability.]

Ideally, some altruistic person or agency could open up a respite home for those in chronic pain like me. We could all be put together so we are no longer a burden, a hassle, an annoyance and/or exasperation to what family we have left. And, we would not annoy them when we can’t sleep through the pain that we are all in all night. We could all sit u together and try to distract each other from the pain we are in. (Like me, tonight.)

Oh, wait. That won’t work, either. This is Massachusetts. No such place like that could ever exist here. Never mind!! What was I thinking?

Remember the saying, “an ounce of prevention is worth a pound of cure.?” Well, I’ve recently discovered that an “ounce of prevention” doesn’t exist anymore. Must be inflation. You must wait until you need the “pound of cure.” Like loaves of bread for $1.00 and gas for less than $2.00/gallon, it’s a thing of the past. (I will offer a qualifying statement – perhaps that is just what the experience is here in big-city teaching hospitals, where doctors wear multiple hats and patient care is often not a priority but a minimal portion of their daily responsibilities – or that’s what I was told by a doc that works at one of these big teaching hospitals in Boston.) Even if this is true, the text below describes with much disdain my current experiences.

I’ve been absent from the blog world for a while. Why? I’ve had several bad experiences recently with the medical community. These have made me take pause to re-evaluate if all this blogging is really worth the effort I put into it.  And I am mad as hell about what I’ve ben put through these past couple of months. There is no “hope” and “rainbows” and “support systems” to fix these problems – and please – don’t dare mention anything about unicorns – there are NO unicorns in medicine. Only zebras.

What I have learned?:

– Doctor-patient communication is NOT the major problem we all think it is. It is DOCTOR-DOCTOR communication. Most docs make a respectable attempts to communicate with their patients during the office visit. It’s AFTER the visit that everything goes down the tubes. For example, one would expect the specialist that a PCP sent a patient to see to at the very minimum, to follow-up with that PCP in some manner. So far, I’m 0-4 in that category. Even phone calls from my PCP’s office are ignored. Pathetic. So, I’ve spent money and time and received nothing in return.  That’s $35 per visit x 4. Plus mileage, train fares, parking costs, time off from work that my husband had to take to bring me to these appointments. And we get – BUPKUS.

Hey – all of you exalted specialists in those fancy teaching hospitals – please remember that patients can’t get an appointment to see you on their own –  their PCP has to refer a patient to see YOU. Don’t you think they are there for a real REASON?

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– Major teaching hospitals are touted as “the place” to see specialists because they “work together” and “do research” on unique cases. Well, I’m proof that unique cases get kicked to the curb and get ignored.

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– Doctors within the same practice groups don’t communicate or read what is in the charts on the patient they are seeing. I was degraded by a “new” doctor that quite obviously didn’t take the time to talk to my primary treating physician at this particular clinic, and did not even peek at my SIXTEEN years of history of my condition in their computer system. The 6 surgeries and 5 pages of every type of modality that I have tried over the past 16 years was simply ignored. Just more waste of time and money and mileage. Of course, no resolution, or offer of any solution was presented, other than – get this – “have you tried “healing touch?”

– I was told point-blank that my “disease process” was not active enough to be considered treatable. This is in spite of all kinds of abnormal test results, objective physical symptoms (and I take pictures to document them) and bringing my husband as a witness to my appointments to basically say ‘ “do something – she needs help!” So, I’ll come back when my disease process is so advanced, I’m close enough to death – perhaps then I’ll be interesting.

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– Not one single doctor has taken the initiative to look at all my symptoms and noticed that they ALL fit neatly into a neat package. They are all related in some way. Yet, each is so concerned with treating just the right pinky finger or the left side of the pituitary gland, I am left to get worse and worse and worse. – Thanks to Obamacare‘s EMR mandate – every single hospital I go to has completely different medical history on me. And, there is NO POSSIBLE WAY to get this corrected. I have tried. Why?  Because the brilliant author of the ACA forgot to require reciprocity among hospitals’ EMRs…and completely closed up the ability for patients to correct mistakes they find in their health records. I got this info direct from the legal department of a VERY large hospital here in Massachusetts. Please don’t argue with me on this one – argue with them. I’ve been through hell and back with three different hospitals on this one. One of them has banned me from talking directly to the doctor I saw – I have to go through “Legal” – as THEY made an (honest to goodness) Federal case out of the fact that an incompetent tech they have employed at their hospital entered all of my meds, medical history and allergies incorrectly into their computer system, and silly me, I tried to have it corrected.  Bad Lori!! I just should let the hospital believe I’m on meds I’ve never been prescribed, not let them know I have some severe allergies to certain meds, and that I have some serious chronic health issues. How stupid of me. Thanks, Obama, for not letting patients be allowed to correct the mistakes that incompetent employees at hospitals make in their own medical records – and for making sure that was in your 2700 page book of rules, most of which have nothing to do with health care.

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So, what the heck is going on????

In my not-so-humble opinion???

The #1 problem: Doctors are NOT interested in communicating with EACH OTHER.

– They are willing to “play nice” with their patients during office visits (most do) – but beyond that, the paternalistic God complex still exists. (male or female docs can be afflicted with this – it is a term of art referring to the attitude that they think they are immensely better than others that did not attend medical school.)

– The strong belief that women are simply “attention-seeking” as they go from specialist to specialist looking for answers is a prevalent as ever.  Please, see my previous post, “Does Your Doctor Believe You?” for studies that evidence these pervasive and disgusting practices that continue to disparage patient after patient, causing more harm to each of them at every visit.

Will I continue to blog?

Is it worth it?

Does anyone care what is REALLY going on?

Your thoughts – I’d be interested to hear what others have experienced.

This blog is a review of a review article published on Medscape (http://www.medscape.com/viewarticle/810602) titled: “A Narrative Review of the Impact of Disbelief on Chronic Pain.” (originally published in Pain Manag Nurs. 2013;14(3):161-171.)

{NOTE: The references I make within my review are to try to preserve the integrity of the original citations within the original article. I have not provided the actual references in this blog for the sake of brevity  – to further research my review of the original review, please see the original Medscape article and/or the original article in the Journal cited above.}

Firstly, I must offer kudos to the professionals that wrote the articles reviewed in the article – and to the authors of this review – for pointing out the bias, shortcomings and discrimination that occurs by medical professionals, friends, coworkers and family members all over the world when in come to the issue of pain. The focus of the articles reviewed were primarily female patients, but men certainly are not exempt from the treatment this review discusses.

Just last week, I sat in an office at Massachusetts General Hospital for over an hour, where a rather large poster exclaiming “pain is the 5th vital sign,” and how healthcare works must ask and patients must “speak up” in if they are in pain because they “deserve treatment.” HA. What a joke.  No one asked me about my pain. Did anyone there really care?  Doubt it.

Articles for the review published by Medscape were obtained in the usual way – though a search of the standard, well-known, world-wide databases of peer-reviewed medical journal articles. No Dr. Oz or WebMD rhetoric here. The main themes focused upon by the reviewers were:

1) the effect of feeling stigmatized – feeling “deeply discredited” (Goffman, 1963)  by not having one’s pain believed (via actual or perceived encounters). Sources of stigma include the medical professions, employers, the general public, family, friends and spouses

2) the experience of isolation (Walker, Sofaer, and Holloway, 2006; Clarke and Iphofen, 2008) because of disbelief of others that the patient actually experiences pain or that the person actually has a medical condition; and

3) emotional distress suffered because of the response received from healthcare providers to the patients’ admission that they were in pain (Allcock et al., 2007; Holloway et al., 2007, and many others)

The literature cited noted that when a patient says he is in pain, it exists (I am paraphrasing here).  It was noted that to have one’s pain disbelieved by one’s own physician is the failure to accept the account of patient as truthful. This opens up the doctor-patient relationship to distrust, suspicion, supposition and stereotyping of ALL kinds far too numerous to list here.

As far back as 1992 (before all the hoopla over the fear of the misuse of opiates was taking up loads of bandwidth, media attention and research monies)  a concept known as “delegitimization” was discussed in the literature by Norma Ware. She referred to studies of anthropologist Arthur Kleinman, who defined delegitimization as “the experience of having one’s perceptions of an illness systematically disconfirmed.” The Medscape authors point out that delegitimization and disbelief are not necessarily synonymous, as delegitimization can occur unintentionally, whereas disbelief is just that – disbelief.  The focus of the review article is solely on disbelief.

[Wow. How many of us that suffer from chronic medical problems have experienced THIS? Does it help to know we are not alone? Do we wish this Medscape article I am reviewing was published in the New England Journal of Medicine or JAMA and not some obscure nursing journal. HELL YES! Perhaps, then the medical community would sit up and take notice.]

Often, patients complaints of pain are chronicled by doctors as “psychological” or “trivial.”

It is noted that often the doctors disbelief of the patient’s pain compromises the accuracy of the pain assessment (which is supposed to take place as part of most exams, but my experience has been that the topic is rarely brought up at all).

Although the authors of the instant article wanted to include a complete social context for the patients experience of disbelief, i.e.:  within their workplace, among friends, and with family. The focus of the historical literature is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals, and thus, the majority of the article maintains this focus.

[This is not entirely a bad thing – as we all know – if our docs don’t believe us, it is likely not many other folks will either. Negative attitudes about a patients chromic pain are often recorded in the person’s permanent medical record – which are passed doctor to doctor, and practice to practice, thus predisposing the patient to being looked upon with a raised eyebrow by any new healthcare professional from which she may seek treatment, often before she is even seen.]

As those of us with invisible, chronic medical issues can attest, one often is made to feel that you MUST have a real and legitimate (and visible) physical pathology.  The review article points out that the due to the lack of physical evidence, a psychological cause is often suggested. The immediate thought is the “if the cause is not in the body it must be in the mind (Lillirank, 2003),” leading the patients to be thought of as lazy or crazy. [Nice. I can just image what my doctors must think of me.]

One of the most interesting discussions I found in this review article was that of the effect of disbelief on self-identity. Numerous studies over the past decade worldwide support the profound impact that symptom disbelief has on identity and esteem. (Please see the original article, referenced above, for the citations to these studies.) Disbelief of chronic pain is prevalent amongst male medical professionals – researchers received some incredibly horrifying responses to queries about male doctors’ female chronic pain patients. Women were described as “fat and tearful.” attention-seeking, and “likely to have a psychological component” to their complaints of pain.” Researchers found that women were aware of these perceptions and to try to preserve a positive identity, often sought to underplay or overplay their pain complaints. Both strategies, however, fail to lead to successful and proper treatment for their condition. (The review also noted that men also experience negative treatment from their doctors upon self-reporting of chronic pain, but those studies oddly seemed limited only to veterans.)

Isolation as a result of being a chronic pain patient is far-reaching and invades every aspect of a person’s life. It is overwhelming to image how one doctor’s negativity and ignorance can proliferate throughout a person’s entire life as a virus, leaving that life in ruins.  Patients reported loss in “areas such as work, finance, relationships, identity, and hope.”  One participant captured the feeling quite well:  “you’re stuck at home, you become a prisoner in your own home. Your life is the pain is your cell” [I couldn’t have said it better myself.]

Often close friendships are lost, further physically and socially isolating the individual. We all know that pain restricts activity, which subsequently isolates people.  A male participant in the Walker et al. study sadly described how  he lost his relationship with his wife, stating: “my wife even turned on me, thinking it was all put on…from that point on I’ve just lived on my own.”

The lack of a medical diagnosis – a name for the pain and suffering the patient experiences daily – helps to keep the patient silent out of fear of negative judgement by others.  [This is why when we finally GET a diagnosis –  we are happy – we have been validated!]

It is so much harder to deal with daily pain without an emotional connection to others. As stated in the Medscape review,  “individuals subsequently suffer not only the pain itself but also the isolation caused by the hidden nature of pain. This unseen pain hides from others, what is for many, a major part of their lives.” This statement is a sad and pathetic testament to the lives that many of us are forced to live due to the insensitivity of the medical professionals we must turn to for help. As mentioned earlier, the medical profession is even more sensitive to anyone claiming “pain”‘ as a symptom due to the plethora of addicts misusing some of the drugs that unfortunately, some people actually DO need for their conditions. The Medscape review is full of examples of poor treatment of patients by medical staff, derogatory name calling (including “hypochondriac”, “drug addict”, “liars”), and the effects of the stigma suffered by these patients.

After experiencing disbelief, it has been reported that chronic pain patients often experience an even deeper depression, and some contemplate suicide. Oddly, there were studies that sought to refute this  – I found that odd. It seemed as if the medical profession didn’t want to take responsibility for confounding a condition that they had created and ignored.

Here is another brilliant quote form the Medscape review: “A failed battle to convince the health professional of the legitimacy of one’s illness can have painful consequences for the individual.” [I would have used MUCH stronger language than “painful consequences…”] Simply put, patients are left angry and hurt when they fail to receive a diagnosis. Often, those that pursue second opinions from other specialists due to the disbelief of the original physician leads to additional disbelief because of the refusal or hesitation of the first physician to provide a diagnosis, leaving the second-opinion doc to be “suspicious.” And thus, the cycle of stigma continues, and the effect on the patient becomes more profound.

[Does this sound all to familiar to anyone besides me?]

As part of the conclusion, the Medscape review article provided these “Recommendations to Health Care Professionals:”

1) Professionals need to be aware that using psychologic explanations of pain can be experienced as a denial of the individual’s pain. Caution must be exercised when using psychologic models with patients.
2) It is essential to be aware of the tension that patients can experience in the expression of their pain. Professionals might seek to openly invite patients to express their pain. This could form part of a regular assessment of the patient’s vital signs.
3) As the professional understands and affirms the patient’s story of their pain, both parties may develop a shared understanding, helping to address not only the patient’s experience of isolation but also the anger and frustration that can stem from not being taken seriously.
4) Empowering the patient with health care options could be an essential step toward countering experiences of helplessness, particularly given the lack of control many patients experience in the persistence of their pain

My requirement would be to make these recommendations mandatory for DOCTORS – not just support personnel. It is the doctor that writes in your chart  – and that chart follows you for the rest of your life (especially now, with the advent of the EMR). I don’t want derogatory comments and supposition about my condition permanently following me around. Would you?

What are your thoughts about these recommendations?

Would you add to them?  Would you change them in any way?

What experiences have you had with being believed about your chronic illness and pain by your medical professionals, your families, friends, coworkers and occasional parking-lot diagnostician?