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???

This is NOT going to be another rainbow, unicorns and bunnies post on using some natural substance, or some new form of yoga or meditation or voodoo acupuncture.

This post is about Transcranial Magnetic Stimulation (TMS). I will not bore you by droning about how it works and the successes it has had treating major depressive disorder (and migraines). You can do that here, an update here (this is a Medscape article – it may require signing in, but I’m sure that anyone reading this blog would have the sense and chutzpah to already be a free Medscape member! – or, here’s one last link from the company that made the machine used during my treatment course.

My depression is pretty much just the usual chemical state of my brain – BUT – this baseline depression has been grossly intensified by some exogenous events of late. My depression over the past year feels as if I was trapped inside of an F5 tornado.

An F5 tornado (photo source unknown)

An F5 tornado (photo source unknown)

Imagine that for just a moment. Try NOT to pay attention to all those things whipping around your head at impossibly high rates of speed – the heavy, black debris that keeps you from seeing anything but what is swirling around you – and try NOT to feel the fear, anxiety and despair about your precarious situation.

Now imagine someone trying to “snap you out if it” with platitudes, CBT, affirmations – or telling you to meditate to feel better. (I’ll bet you’d like to imagine crashing into them with that F5 tornado, huh???)

[Just a hint, people – never tell a depressed person to “snap out of it,” “grow up,” etc. It is a thoughtless, selfish act of cruelty to do so. See this link from psychcentral.com for a more complete list of things NOT to say to a depressed person.]

I have tried at least 19 different antidepressants over the past 30 years. I have tried every alternative therapy. Nothing has worked, or, I had horrid side effects  to many medications, or, how my body processes them (due to several genetic mutations I have known as “MDR” – multiple drug resistance). Hey, I didn’t choose my genetic makeup. My apologies to the medical community.

So, when it became obvious that I had to do SOMETHING about how depressed I had become over the past year, I was given 2 treatment choices (covered by insurance): TMS or ECT (electroconvulsive shock therapy). Of course, I chose TMS after much research into its origin, efficacy and safety. (And, I have never met a person that went through ECT that came out of the treatment course with their personality and intelligence intact. Nope- not the treatment for me.)

Bottom line: the TMS worked!!! I was a new person in about 4 weeks. Seriously, I can’t EVER remember feeling as good and as “normal” as I did – and it was awesome!!! My sleep and appetite improved. I wanted to do things and go places. I was even able to tolerate my chronic pain a bit better as well. And, I had much fewer migraines!

What is the treatment like???
It’s 36 sessions – 30 of them consecutive (5 days a week for 5 weeks), then 3 per week for the next 2 weeks.
I sat in a reclining chair, a cross between a big dental office chair and one of those used in blood-donor labs. I had to put those squishy ear plugs in my ears since the decibel level of the treatments can be loud. White paper tape was placed on my forehead to mark the positioning of the contacts. The portion of the machine carefully placed against my head was relatively small, and had 2 contact points, one on the left side of my head, the other a bit towards the right side.. A chime sounds to let me know the magnetic pulses were about to begin. (I liked that – with my startle response I would have jumped out of my seat if the pulses just started up sans warning!)  I will be honest. The treatments  – 4 second “trains” of magnetic pulses, followed by a 32 second respite in-between – were quite “uncomfortable” at first. It was not a “tapping” sensation as described in the research literature. It felt more like a repetitive bee sting – or a woodpecker with a large, sharp beak pecking at my head for those 4 seconds. As the treatments progressed, I grew accustomed to the feeling. Each session lasted about 50 minutes. Watching TV or chatting with the nurse during the treatments helped me acclimate to the weird feeling. I am grateful I had such kind, engaging nurses to monitor the treatments.

The issue with this treatment is this: the effects don’t “stick” with everyone. After less than one month of being without treatments, I already feel that tornado approaching again.

Twice weekly maintenance treatments are recommended by advocates of the therapy – and I now can completely understand why now that I feel the effects wearing off – but insurance doesn’t cover them. Of course not.

Each 50-minute treatment is $350 w/o insurance coverage. There is no way we can even consider maintenance.

Well, at least I got to know what it was like to feel “normal” for about a month. And, my husband had a happy, fun wife for a brief moment in time.

I’m grateful for that time, and to my TMS doctor for helping me decide to try the treatment, and helping to get the treatment approved by the insurance company

I honestly think the insurance company would just rather see me dead. There really is no alternative for someone like me. I CANNOT take any drugs. 30 yrs (off and on) of talk therapy hasn’t done much more than give me something to do on a regular basis.

As the tornado envelops me once again, I will try to remember what “normal” felt like. I imagine I will be way  too busy dodging self-hatred and anger at myself for being this “in-valid” person, like before. And – mustering the strength to “put on the mask” so others can’t see my pain.

If insurance companies would cover maintenance treatments, think of how much money they would save, not having to pay for the traditional care of someone like me…all that useless talk therapy/group therapy, etc….and all those medications that were useless or caused more problems… I think about how much better my life would be. And how much better my husband’s life would be. And it makes me even more depressed knowing that I make my husband miserable because of my health conditions.

Based on what I have read about others’ experiences with trying to get coverage for TMS maintenance treatments, the insurance companies pretty much stop short of saying they hope we will just off ourselves, as that will save them money.

If I can’t fight that tornado anymore, I hope that Harvard Pilgrim health insurance throws a party so they can celebrate how they selfishly helped one more person leave the planet. I want them to know that if they weren’t so ignorant about people with conditions like mine (just another zebra), I would be alive, and be a happy person with a happy family. But thanks to the judicial-esque decisions of their “death panels” (just an affectionate term for their grievance boards) – they will decide that I’m simply not worth it. My demise will be their fault. They left me with no other option. Oh, and thanks to the US healthcare system as well for supporting their ignorance.

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

I’ve been absent from my blog for awhile.
I am so emotionally downtrodden from dealing with all the paternalistic and micro-specializing docs that don’t seem to care that we are REAL patients that need their help,

Looks like I’m gonna have to, once again, go out if state to try and get help, as not a single specialist I’ve seen will look at me as a whole person, consider my medical history, current symptoms, environmental factors, etc.
It’s humiliating.

All of my research is seemingly for naught / other than that it assures me I’m not crazy – it is just that the doctors I see don’t stay current on advances in their own field. (Umm, if I can stay current on advances in their fields vis a subscription to Medscape Updates – so can they.) It’s their JOB after all.
How many doctors do I have to see for help that haven’t a clue about recent devices/meds and treatments recent approved by the King of Dealaying Necessary Treatment -the FDA – and therefore can’t even address the reasons why I am coming to see them: will these new treatments work for ME?
How do I know- I’m just an informed patient forced to advocate for myself – they are the ones that went to medical school…
I keep going cack to the first line if that Hippocratic Oath that physicians take when becoming doctors…”First, do no harm….”
Then I think about all the harm they have caused me emotionally and physically – the former for not believing me (see the Medscape article: “a narrative review of impact of disbelief in chronic pain” for some eye-opening facts…and the physical pain I suffer daily, some worse than others, mostly b/c they refuse to try and figure out WHY I have these issues – and just blow me off, stop returning calls, telling me flat out they can’t offer me any hep, or responding to my queries with downright nasty emails.
How easy it has become to give up on my own pathetic life, seeing than well over a dozen Boston survivalists have. Why should I bother trying to advocate for myself anymore when it seems to me, that based on the treatment (or lack thereof) I receive, sends a message loud and clear: “YOU ARE NOT WORTH OUR TIME OR ENERGIES”
If one more doc gives me that snarky “talk to your PCP about that” – I may just make a bigger deal about this stuff then I already TRY to do. Don’t these specialists realize I was sent to them BY my PCP??? Can’t they comprehend that? Nah, obviously not. I get that response far too often.
My wonderful PCP is at a loss as well. What is SHE supposed to do – she is doing the research and calling around, finding docs that specialize I issue I have. Then, these specialist disrespect her by saying the know nothing and that I should call my PCP. Asses. Plain and single. What the hell are they even doctors for, if helping a patient is such a burden for them.

I am DONE being a docs’ doormat, his burden, his waste if time. – I refuse to give another arrogant 30 yr old z chance for him/her to slander me In their reports that are part of my record with snarky and untrue comments about me personally…a chance got him/her to tell me everything is FINE when I’ve got abnornal test results I could paper my walls with….I’m done.

Last I checked I was a human…you know, a carbon-cased life form of extremres
but I guess turning 50 makes me less of a human, and less value to the world In general.
These arrogant status-seekers wouldn’t miss me if I did die from something they missed –
And they are missing quite a bit.
There are 7 billion people + on this planet – why should they care about ME?

How psthetic has heath care become in the US?? (Heck, don’t get me started on the superior treatment those in Australia receive compared to the US for my conditions.)

Yes, if my heart is “fine doc then why do I have debitTing chest pain daily? Numb arms/difficulty breathing/Irregular hear beats from 30-120. Sx that would send anyone else to the Art-but no, not me. I’m FINE. I had a cardiologist tell me so- after the 5 second EKG). Have these cardiologists read hoe inaccurate these tests are for women…oh, that’s right, they don’t read updates meant for them and published by their peers of Medscape.

They would just as soon see me die so I can be one more cadaver for them to make fun of in medical schools.

A CHALLENGE: for ALL Someone, please , prove me wrong- I challenge you / find me ONE doc, here in the US , that cares about MY life, my health (or lack thereof) , my ongoing and worsening symptoms….I double-dog date you…you won’t find a a single one..
Looking forward to some interesting responses!

Let the challehe begin!!!

Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

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