Wednesday, February 23, 2011

Working on Your Degree to Become a Professional Patient?

By Amy, Spirochicks Contributor

This is Part II of the Professional Patient articles. For Part I, see Are You a Professional Patient?

This past summer I had an experience that made me stop and consider how my mindset might be affecting my health. I began to wonder, was thinking of myself as a chronically ill person who was constantly researching, discussing, and trying out treatments somehow keeping me that chronically ill person who was always researching, discussing, and trying out yet another treatment? Would changing my mindset to think of myself as a fully recovered person change the outcome? I don't know, but I've been thinking about this for several months now and am beginning to formulate some thoughts which I hope share with you in part III of this series.

In the meantime, since I like to have fun even though I am chronically ill, I thought I'd put together a checklist of a few things that might indicate that you're working toward becoming a Professional Patient. Kind of like those silly tests in women's magazines. Just for fun. I think these are things that so many of us Lymies relate to, so I hope you'll find it entertaining as well.

Signs you may be working on your undergraduate Professional Patient degree:
  • You diagnose yourself with Lyme disease before your Primary Care Physician even/ever mentions it
  • Your social life consists primarily of hanging out on the various Lyme boards swapping stories with other Lymies about treatments, herxing, and all your varied, sundry, and yes, often bizarre symptoms
  • You know the history and the full name of the word “herx” (or soon will)
  • You spend lots of time looking up new supplements and treatments, looking for things that will help you get well
  • One of your favorite topics to discuss with family and friends (much to their chagrin) is your health and treatment
  • You are starting a list of supplements and treatments you might want to consider trying at some point in the future
  • You have heard of coffee enemas but can’t imagine why anyone would actually do that
  • You have heard of the gluten-free, casein-free diet but can’t imagine how anyone could do that
  • You have heard of muscle or energy testing but when you’ve heard how it’s done you’re skeptical, to say the least
  • You know who Burrascano, Buhner and Klinghardt are, and what IDSA, ILADS and Igenex are
  • You can explain all these: brain fog, floaters, red crescents, tinnitus, EM rashes, EBV and HHV-6

Signs you may be working on your advanced Professional Patient degree:

  • At your first appointment with a new doctor they ask if you are an M.D. yourself
  • You frequently bring in new treatment options to discuss with your non-mainstream, well-versed LLMD and s/he may have heard of it but doesn’t have any experience treating patients with it
  • Your doctor often tells you that you are the first patient they have doing a particular treatment
  • You have boxes and boxes of supplements, nearly all of which you have tried and all of which you know what they are for
  • You are bored when anyone talks about anything other than Lyme disease, treatment options, or your symptoms and you frequently change the subject of conversation back to these topics
  • You have an active list of supplements/treatments/diets/medical devices you want to try next and you are excited each time you get to start on something new to see how you will react to it
  • You do regular coffee enemas and have taken to referring to them as your “frenemas”
  • You have been fully GF/CF for months and months and you don’t EVER cheat because you understand the biology behind avoiding gluten and casein
  • You are so reliant on muscle/energy testing that you’ve been learning how to do it yourself so you can energy test everything, from foods and supplements, to shampoo, lotion, and make-up, whatever and whenever you want
  • You can explain all these: HPA axis, methylation, chelation, glutathione, cytokines, XMRV, and c4a

Let me know if you have anything else fun to add to these lists!

Interested in changing your mindset so you don’t end up a Professional Patient for life? Look for my Professional Patient Part III article coming soon!


Keith (themadchemist/spirotech) said...

Hello Amy

Congrats on part 2. Please Don't mistake any of my comments as being directed at you for the previous installment or this one. My main intent is the waking up of minds and spirits to this illness we struggle through separately but together.

Addressing the term Professional, as used in Professional Student. Our society has taken a very dim view of academics. Don't get me wrong, everyone works towards that Bachelors, but seriously count your friends and family with degrees and ask yourself, How many actually are working in the field they are trained. My sister in law is a Vet tech with a BS in Business.
The decision to step past the undergraduate level is where we become the Professional students, or so they call us.

Here's a story of a Professional student.
He graduated, went to graduate school. He graduated with a PhD in Physics and then searched for work as a professor for 2 years before taking a job in a patent office. While there he wrote 5 physics paper that were to be published. He spent 3 years working before he was back in academics doing research again.
Of course for those not recognizing the story, I'm talking about Einstein.

What would science be today without his being a Professional student.

So why bring this up?

After looking at your list of Advanced Patient List, I have very few.

---You frequently bring in new treatment options to discuss with your non-mainstream, well-versed LLMD and s/he may have heard of it but doesn’t have any experience treating patients with it.
---Your doctor often tells you that you are the first patient they have doing a particular treatment

I was the first to bring the Marshall Protocol to Dr T, 2 and 1/2 years ago. I was the first. Now he has many patients using the MP to get well. I also gave him a DVD-rom with 2.3GB of papers, lectures and PPT's, which I received a late night phone from him thanking me for the wonderful info source. I burn one for every Dr I see, I often wonder how may end up in the trash.

Most everything else is not on my list although I have done the Hulda Clark coffee enema and found it disrupted my GI and made it worse.

Due to the Neurological aspect of Bb and its co-infections in combination, I can see that uninformed people would have a tendency to run in circles of panic. Trying and learning everything. Trying to find the truth. I was lucky enough to have spun my wheels in graduate school learning how to learn, with a BS in Chem to aid me.

Most Bb sufferers are not in my situation.

My view is that the AMA and medical community is at fault. They force us to become students because they can not do their jobs.

"Do no harm" HA - allowing an extremely sick person to suffer meanwhile telling them their disease doesn't exist, or worse pointing toward somatic reasons, i.e. its in your head, is the ULTIMATE Harm.

MD's don't have any more answers then us. So they Lie and feed us the banter that has been passed to them by Pharma reps (oh by the way, I know 2 and neither has a degree in Bio anything).
MD's willingly except research that is funded by the company the produces it. Do they even understand the concept of BIAS!

Geez, did you know Pepsi did a study in the 70's and Proved that people prefer Pepsi. HA.

To be continued, I went over the 4096 max characters


Keith (themadchemist/spirotech) said...

I like to call them McDonald's Drive thru Dr's. Is your Dr one?
- has s/he physically touched you, to examine you?
- does s/he look more at a laptop then you
- is your diagnosis based solely on your bloodwork
- have you be told Chronic Lyme doesnt exist based on the unknown defunct and contrived ISDA guidelines
- do you spend more time in the waiting room then with your MD
-and the list never stops.

If we are sucked into the downward spiral of believing we are uncurable because medicine say so then yes we could become Pro-patients as you describe.
Grasping at everything out there in desperation.
This is why truthful information is so very important.

but if we are intellectually looking for methods that our Dr's refuse to believe exists because they believe the disease is Phsycosomatic, Then we are being Pro-active.

I have a perfect example I'll share later as I need Tammy to help dig out of the 2 binders of Lab reports.

but here's a letter prepared for Barnes Hospital in St Louis.
sorry the pictures of the molecular formed don't show here
brand names: Levaquin and Tavanic
What antibiotic was specifically requested by my Lyme Specialist, this had to be told to each person along the surgery path as my Lyme Specialist was never contacted, even though Dr Matthews said he would definitely contact him.

------Picture of molecule

brand names: Avelox, Avalox, and Avelon
What was actually given to me based on Barnes medical records. When I questioned the bag pre-surgery I was told it was the generic name for Levaquin. Both myself and my wife were present during this conversation.

------Picture of molecule


Under the Bush administration (2001–2008), patent extension legislation was signed into law that allowed Johnson and Johnson–Ortho McNeil, as well as other drug companies, a six-month patent extension for testing their products for safety in children. Johnson and Johnson–Ortho McNeil will earn hundreds of millions of dollars due to the FDA's recently granting pediatric exclusivity for Levaquin, as this extends their patent monopoly till the end of 2010.

This means Levaquin has NO GENERIC in November 2009 – Was I lied to???

Sorry - I blame Pro-patients on amateur-MD's. Sadly they are making Our disease more untreatable and destroying our mental state in the process.

Do KNOW (not no) Harm, should be there motto.


tmc said...

this is the 3rd time a post has disappeared on me

and I didnt save the first post and with lyme fog its hard to remember all the points

What is up with this?


Bryanne said...

I have one to add to the list... You know you are a professional patient if you have a large machine in your bedroom that looks as though it could help you travel through time and space... (i.e coil machine). haha

AbbeyS. said...

Spirochick authors,
What do you recommend for fatigue/energy? Lack of energy is driving me bananas.