Sunday, February 27, 2011
Wednesday, February 23, 2011
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!
By Amy, Spirochicks Contributor
This is Part I of a three part series on being a Professional Patient.
Over the summer I did a series of IV treatments that were extremely grueling and difficult. Every week day for 12 weeks I went to my doctor's office first thing in the morning, waited for up to 2 hours to be seen, spend 1 hour having them get an IV into my overly abused veins, and then spent up to 2 hours waiting for the IV medication to go in. Then I'd go home and feel horrible for a few hours from the medication. All of this took up so much of my day that it was difficult to get anything else done, including eating meals, let alone grocery shopping for my family, for example.
One morning in the middle of this grueling routine, while driving to my doctor's office for another round of all this fun, I realized that I was actually enjoying all of this! How in the world could that be?? It was painful, horrifically expensive, and involved sitting for hours and hours in an office with people who are some of the sickest of the sick. But,I realized that this was the most exciting thing I had done in probably YEARS, it was the most interaction I'd had with other people (and people who "got" me!), and I received a lot of attention from the staff as well as other patients for the ordeal I was going through.
This was totally crazy! I was ENJOYING this whole IV thing, even though it was physically, mentally, emotionally, and financially draining! OMG, I thought. Had I become a professional patient?!?? What did this all mean? Would I never get well? Would I spend all my time in my doctor's office, not socialize with anyone but my doctor's staff, sink all my money and time into treatments for years and years to come? Was this what I had unknowingly become? A professional patient?? This is EXACTLY what I'd always, always told myself I would never become!
A few months after this surprising thought crossed my mind, I was out to dinner with some other Lyme patients. Of course, the topic turned to various treatments and supplements. There is nothing like this topic to get a bunch of Lymies excited and chatting away. We are all so dedicated to finding the next thing that will help us, it always gets us rev'd up. Several people commented that they had a long line of treatments in mind that they wanted to try next, and perhaps they were kind of professional patients. And that's when it hit me. I didn't have a list. For once in the 10+ years of being very sick and working doggedly to learn about every single treatment out there in the hopes of finding the right combination of things to help me recover, for once, I didn't have a single thing in mind to try next, let alone a long list of things to do next. So, I thought, perhaps I'm not a professional patient after all? Perhaps I am ready to move on to the next phase of my life, where I'm not chronically ill and always chasing down the next treatment to do in order to hopefully, eventually, fully recover. In all honestly, after finding myself ENJOYING those IV treatments I did over the summer, this thought comforted me.
But, I wondered, how much do we, at least on some level, keep ourselves from full recovery by being a professional patient?
I had no list of things to try next for awhile there. It's now been about six months now since I was doing those grueling daily IVs, and I have to say that right now, I've got a list of six new things I plan to add into my protocol in the hopes of eventually reaching full recovery. The good news is that these things weren't my idea, but things my doctor wants me to add into my protocol. But, does it matter if it's my list or my doctor's list? Does it put me back into the mindset of the professional patient? My hope, of course, is that these six things get me that much closer to full recovery, and then whether or not I'm a professional patient will be a moot point.
Interested in seeing if you are a Professional Patient? See Part II: Working on Your Degree to Become a Professional Patient?
Tuesday, February 22, 2011
By Ozone Amanda, Spirochicks Contributor.
The December 8th “Health” section Chicago Tribune article was not true journalism, but an opinion piece. It is a black spot on the Chicago Tribune’s journalistic integrity that it was not labeled as such.
As Paul Raeburn states in his Knight Science Journalism Tracker article, the Tribune article is “what happens when reporters make up their minds about a controversial story before beginning to write.” Raeburn goes on to say that if the Tribune reporters wanted to debate the existence of chronic lyme, that would have been an arguable point. Instead, they drafted a bit of anti-chronic lyme propaganda, complete with the vignette of a patient who believes lyme was manufactured in a government lab.
I say if the media or medical journals want to debate the existence of chronic lyme, bring it on. All of us who suffer know it exists, but scientific debate is the only way conditions and treatments become accepted. With insurance companies, medical authorities, and now, reporters persecuting chronic lyme patients and their doctors, demanding more peer-reviewed, scientific research into the chronic lyme “question” may be the only way to reverse the tide.
Maybe researchers can start by examining lyme testing. Opponents of chronic lyme believe testing proves sufferers do not have lyme, while proponents say testing is deeply flawed. Dr. Klinghardt, a prominent lyme doctor who developed one of the major lyme herbal protocols (and whom Callahan and Tsouderos seem to have ignored in their research), writes: “Bb tends to infect the B-lymphocytes and other components of the immune system that are responsible for creating the antibodies, which are then measured by an ELISA test or Western Blot test. Since antibody production is greatly compromised in infected individuals, it makes no sense to use these tests as the gold standard or benchmark for the presence of Bb (7).” Why not fairly examine this claim?
We cannot let prejudiced reporters pre-empt real research by experimenting with words and quotes as a “journalistic” substitute for labs. Chronic lyme exists. We know it. If you don’t believe it, please go test that theory with something other than opinion.
Wednesday, February 16, 2011
Welcome to our newest SpiroChick, Ozone Amanda.
Tuesday, February 15, 2011
After first posting in November about the health benefits of Earthing, I am astounded that so many in the Lyme community have responded by trying Earthing - the simple act of putting your bare feet on the ground or bringing Earth's electrons indoors with simple grounding devices.
Many Lyme patients have written about how Earthing is affecting them. Reports range from little effect to slightly better sleep to very improved sleep to full-on herxing. Lyme patients might be the only group who need to be careful not to Earth too much at first. Below I describe an evolving set of hypotheses to explain what Lyme patients are experiencing.
Here are the evolving Lyme-Earthing Hypotheses:
Electron deficiency can explain some of the differences in how people respond to Earthing, according to research done by Dr. William Amalu. He used an electrometer to measure the effects of Earthing on people in a specially-designed building in Iowa. Test subjects who were regularly in contact with the Earth, like gardeners, appeared to take in fewer electrons than people who lived in a high rise and did not do things like gardening. Amalu said it appears that people who are highly deficient practically drink up the electrons. This might account for my personal reaction to Earthing being so strong: I was probably highly electron-deficient from total avoidance of going shoeless.
Blood Thinning and Bb Cysts
We've been curious about Lyme, the blood-thinning aspects of Earthing, and the blood-thinner drug contraindication. (Coumadin is a contraindication when regularly Earthing.) Here are four hypotheses about Earthing and Lyme given what we know about blood-thinners:
- Prevention of cell-wall deficient forms: "Blood thinners appear to disrupt the formation of spheroblasts [cell-wall deficient form of Borrelia burgdorferi] in the bloodstream, and that could explain the improvement that some patients experience using Heparin." noted Steven Phillips, MD at a 2004 Lyme conference. The cell-wall deficient forms allow Bb to hide from antibiotics, so if they can't form, Lyme can't hide. Since Earthing is a strong blood thinner, does Earthing also prevent Bb from converting to cell-wall deficient forms? Maybe.
- Prevention of Bb from sticking to brain cells: Heparin has the "highest negative charge density of any known biological molecule." The Earth, if you recall, has a negative charge and donates electrons to cells, causing all to be negatively charged and repel each other, like magnets. This is why Earthing thins the blood. Stephen Buhner wrote that Heparin prevents Bb from sticking to brain cells. Is the negative charge the reason? Would Earthing do the same thing? Maybe.
- Vascular penetration: Does the blood thinning aspect of Earthing allow our treatments to penetrate deeper into our vascular system than they've been able to go before, reaching colonies previously left untreated? Maybe.
- Higher O2 delivery: Is the thinned blood more oxygenated, delivering a higher, and therefore more toxic dose of oxygen to the Bb and co-infections? Maybe.
Tapping into Earth's natural frequency could be another reason Earthing has an effect on Lyme. Why are most deer infected with Bb, yet most seem to be asymptomatic? If they do have symptoms, why don't we have reports of deer going crazy and presenting with swollen joints? Do infected lab animals show Lyme symptoms because they are not Earthed? Is Earthing part of what protects the deer? When I spoke with David Wolfe, he didn't hesitate to say yes. When I asked Dr. Stephen Sinatra, the famous heart surgeon and co-author of the book Earthing, he mentioned Earth frequencies might be toxic to Bb - causing the cyst forms to convert to spirochetes and enter the bloodstream where they are susceptible to antibiotics. As a side note, one person mentioned that deer eat teasel and other herbs--natural antibiotics that are toxic to Lyme, so Earthing might not be the whole story vis a vis the deer.
The effects of Earthing on the nervous system are well-documented and not specific to Lyme, but I do have to mention that since Earthing will normalize cortisol and helps most people sleep better (75% of insomniacs, according to Dr. Amalu), improved sleep will obviously help insomniac Lyme patients. Clint Ober mentioned that in ill patients, after 16 weeks of Earthing the nervous system will normalize. I'm presuming he means patients who have worked up to overnight, every-night Earthing.
Other effects of Earthing include blood sugar regulation and thyroid normalization. Again, these are not Lyme-specific, but normalizing these functions should be a great boon to eventual recovery.
Indoor Earthing: Important Note about Properly Testing Your Outlet
I've found that the voltmeter (about $10 at your hardware store) is the only way to check for a truly grounded outlet. A voltmeter measures the difference between two voltages.
Caution: you can electrocute yourself if you stick one end in the rectangular part of the socket. Don't do that!
To use it, put the black test lead into the third prong of the outlet - the round one. Hold the red end with your bare fingers and read the AC (not the DC) setting. You will have a steady number when you have a truly grounded outlet AND if you are not touching any grounding device. The number will be the difference between your body voltage and that of the Earth via your grounded socket. If you see a fluctuating number, your outlet is not truly grounded and you can't use it for grounding - instead you must use a grounding rod that goes directly to the outside. If you have a steady number, then touch a grounding device while still holding the red test lead. If your voltage drops close to zero, you are grounded and have confirmed your grounded outlet. See my Earthing video Part 2 for a demo.
If you get an Earthing kit with an outlet checker: The outlet checker is not the same as a voltmeter! Follow up with a voltmeter if your outlet checker lights up two orange lights on the right. This indicates your outlets might be truly grounded, but you need a voltmeter to confirm.
Monday, February 14, 2011
I am blessed with a patient spouse. One of his greatest gifts has been the gift to sleep when I need it, which is still much of the time. He doesn't worry when the house is a mess, which is most of the time, and appreciates that the energy I do have is shared with our children.
A friend once told me that before you can truly love another, you must first love yourself. Wise words. So on this Valentine's day, my wish for you is simple; to find the strength to love yourself, with all the imperfections of disease. The spirit inside that keeps you fighting is amazing! Celebrate it. You are stronger than your body. You have strength beyond words. Yes, Lyme brings pain, fatigue, brain fog, muscle weakness, rage and anxiety, yet it also brings compassion, courage, patience and hope. Sending you a little Lyme love this Valentine's day!
Thursday, February 3, 2011
Most 21 year olds roll out of bed in the morning, make a pot of coffee, and hurry off to their scheduled college course or newly obtained part-time job. They may go out to lunch with their best friend, stop at the mall on their way home, or head out in the evening for a night on the town with their typical "crew".