Anyone who has read more than one post on this blog surely must know I have some interesting medical conditions that all stem from one particularly troublesome and interesting case of a clotting disorder called antiphospholipid antibody syndrome, sometimes referred to as Hughes disease after Dr. Graham Hughes (currently practicing at Lupus Center at London Bridge Hospital, London, UK). This disease is characterized and diagnosable by having one of several antibodies present in the blood that can cause clotting as well as having:
- A DVT that cannot be explained by a circumstance that can cause clotting in anyone, like flying
- Having had at least 3 miscarriages
- Arterial OR veinous clotting
- Strokes (large or small)
- Embolisms in any part of the body, that is a sudden blockage of any artery but the most common being in the lungs (pulmonary)
The idea with any anticoagulation is that if we can slow the process of clotting enough with a drug that can break apart clots than we can stop clots from destroying a person’s body. When APS was first defined as a disease separate from Lupus in the 80’s the anticoagulation regimen advised was warfarin/Coumadin… a rat poison. The problem with this medicine for most patients is that if you’re able to stabilize at a therapeutic level on it, you pretty much have to eat the same thing everyday because the amount of vitamin K and the consumption of other specific foods, such as garlic and green tea, can increase or decrease the amount of coagulation taking place in the blood. I don’t care who you are, no one wants to eat the same food everyday. No one. Over the years other anticoagulants have emerged and many have been FDA approved for use in APS patients but the drug of choice has continued to be the rat poison.
The problem with having any autoimmune disease or autonomic dysfunction is that they are incredibly complex to understand and even more difficult to treat. Any time someone with one of these diseases sees an new doctor they end up going through the same line of questions where the doctor doesn’t believe you have what your medical record says you have, wants to rerun the tests, and wants to put you on the treatment plan that has historically been most popular, in this case using a drug that was the first choice almost 40 years ago. The problem with only using one drug is that one drug will not work for all patients.
Think about it. If you have a headache and you go to the drugstore you have Tylenol and off brand acetaminophen, aspirin, Aleve and its off brand, Motrin and off brand ibuprofen, Excedrin and its off brand, on top of homeopathic and all natural approaches as well as those much loved family remedies like swiping Vic’s across the forehead or layering thin slices of chilled lime on the forehead and neck while wearing a cold gel eye mask. We all have our go to for that headache and when offered the choice that doesn’t work for us will shake our heads and politely decline explaining that THAT doesn’t work for us. If you have that many choices for a common headache, why on earth would we expect that only one drug should be used for a complex autoimmune disease?
Yet this is what people with this disease are always told:
“Why aren’t you on warfarin?!”
There are always a few pioneering pharmaceutical companies who see opportunities to change the modus operandi, make life better for the people suffering from a disease, and of course make a lot of money, and many of the drugs they’ve developed show promise and work for many patients with making management of the disease easier or by actually doing what they are advertised as doing, just as there are pioneering doctors out there doing research and trying to find better ways to treat and manage this disease.
While this rat poison is effective for many, there are patients who are completely managed on a simple baby aspirin everyday. Similarly there are patients who continue to clot on warfarin and need other pharmaceuticals to stop the clotting from continuing. Which brings me to the point I really want to address:
Social Media Medical Professionals who dole out wisdom based on their vast experience and Google MD certification
I know this is not a problem that is unique to me. This morning a friend who is undergoing cancer treatments asked if I ever get tired of people trying to tell me how to cure my diseases because they know someone who knows someone who read something that said if you will just do _____ than everything will be fine:
- Eat paleo, ketogenic, vegan, vegetarian, or gluten, nut, milk, and lactose free. Or do the no diet diet! Or the grapefruit or cabbage diet. Grapes only!!
- Give up coffee
- Use more essential oils
- Use crystals
- Positive self talk
- Whatever THE doctors from The Doctors are recommending
- Smoothie everything
- Himalayan salt lamps and for your food
- Electroshock therapy
- Alpha stim therapy
- Use light therapy
- Avoid all blue spectrum light
- Avoid the sun, or worship it
- This prescription drug or that one
- Sleep more, sleep less
- Watch out for the harmful rays from your microwave and cellphone
- Magnet therapy
- Bariatric surgery
- Acupuncture and chiropractic care
- Apple cider vinegar and coconut oil cure them all
- Oh wait, lard is the new coconut oil
- Unless you use olive oil, or avocado oil, or grape seed oil, or walnut oil
- Ginger. All of the ginger!!
- Turmeric… pills, no dried, no the root
- One word: lycopene
- Wheat bread vs whole grain vs spelt vs ancient grains
- BREAST MILK!
- Placenta… yeah… I said it!
- Consume capsaicin to burn the bad out by eating all the peppers
- Exercise more, no exercise because your body needs that energy to heal
- Alkaline your body
- Pray more
- Rise with the sun and go to bed with the dusk
- Drink only spring water
- Goat yoga! Hot yoga! Screaming or laughing yoga… oh hell, just do yoga
- Horse, dolphin, cat, dog, or pig therapy
- All the Chinese medicine
- Cut all sugars
- Eat only organic, non-GMO, antibiotic free, pesticide free, unprocessed foods, and make sure it says “natural” on the label
- Add soy, avoid soy
- Make your own cleaning products and eliminate all harsh and harmful chemicals from your home and and daily use/exposure
- Fragrance free and dye free everything
- Massage, reflexology, reiki
- Detoxify your body
- Avoid all vaccines, or get extras
- Bee sting therapy and leech therapy
- Laugh therapy
- Manuka honey
- Bathing in goat milk or wine
- Eliminate all pharmaceuticals
- Helminth therapy… that’s parasitic worms y’all!
I get it. People want to be helpful and none of the things on this list are things that will definitively be the source of problems if you add them to your everyday, although a couple are pretty fucking sketchy if you ask me. In fact many of them are incredibly healthy choices to make that I have made for myself. The problem is that the people giving this advice are often people who have little or no experience with the disease they’re discussing and usually are people who know nothing more than what has been shared with them by the person they’re now advising or than what they learned at Google Medical University. With some diseases even doctors may be dealing with a patient that exhibits symptoms they’ve never seen and will never see again caused by diseases they had to read about before walking into the exam room.
What qualifications does someone need to have before you should take their advice?
For my condition, almost every doctor I meet holds less knowledge and understanding about it than I do. When they say I need to change something I tell them no because I really have read the latest research and papers, things they haven’t seen, and most importantly I actually understand them. It is to the point for me that doctors assume I hold a medical degree with a specialty related to my conditions because I know all the things that they don’t.
Does that fact stop the doctors I encounter regularly from trying to change things or redirect me?
Does it stop strangers on the internet who have the same diagnosis but who are the lucky ones who are easily controlled, without the plethora of other diseases having been caused by the clotting, and who have never had any negative side effect or reaction, such as clotting while on anticoagulants, from telling me to stop the prescriptions I take everyday to keep my blood from clotting so that I don’t die because they are controlled on warfarin and I should be to?
Does it stop people who haven’t lived with this disease from trying to give me their well-intentioned advice, insisting that if I will just do what they are recommending that things will be better?
Not even remotely.
The truth of the matter is that I, like many patients with chronic illnesses and chronic pain, have to be the expert because 99 times out of 100 I know more about what is going on in my body than the smartest and most well read doctors I meet. Personally, I know far more than all but 1 person I have encountered in my life.
Yes, please let that tidbit sink in:
In all the people I have met in the somewhere over 35 years I’ve lived on this planet, I know only 1 person who is more knowledgeable about this disease than I am.
Want to know what’s even more remarkable?!
I can keep up with her.
When I met her she confirmed everything I suspected, everything I had thoughts on but couldn’t find research on or articles about. Can you guess why I hadn’t found them?
She hadn’t written them yet.
Look. I’m not saying that well meaning advice can’t be beneficial. Nor am I suggesting you should ignore the medical advice of those who really know more about things than you do. Furthermore, I’m not suggesting that using homeopathic remedies and natural approaches to health and well being are to be avoided. In fact, in every way possible I err in the side of nature than in the side of big pharma.
What I am saying is that you should educate yourself about your conditions, not by visiting WebMD and diagnosing yourself with things, not by simply asking strangers online, and not by searching only one avenue of understanding, but by reading the research about things that you’re told you have so that if you find that the treatment protocol that doesn’t seem to be working for you is not the only choice, you have something to ask about, even if it means looking for a new doctor, and by seeking multiple viewpoints of knowledge and information than what you normally encounter.
More information, more intelligence.
More intelligence, more intelligent decisions.
And I’m also saying that, for the love of doughnuts, put down the cruller, pick up some hummus, use 2 scoops of sugar instead of 3, eat more lean meat and green veggies, walk up the stairs and from the back of the parking lot, and for shits sake go to the gym 3 times a week and make yourself sweat because you’re working that hard.