MAYDAY! Take A Bite Out of Lyme and Thunderclap for ME/CFS/ME are some of the campaigns occurring in May for NEID awareness. Also new, a major lupus study seeks participants.
[Note: A group asked me to write an article especially for Lyme Disease Awareness month, but I have not seen it, so I am putting this out (first or not) on my own blog. It's slightly re-edited from what I sent to the LDA group member who contacted me.]
There is so much I could say to my younger self that may have avoided Lyme et al. altogether or would have given me a real chance to be appropriately treated.
Many people with Lyme and/or co-infections think that they did something wrong initially and at least sometimes chastise themselves that had they pursued Lyme etc. from the beginning, they never would have had their debilitating conditions. Frankly, I am not certain of this. I was treated and at a point that was considered early at the time. The inadequacy is beyond question.
Of course, when that insufficiency happens and Igenex says you are CDC level positive 12 years later, the CDC/IDSA find an excuse to say it's a "false positive." It's funny how those groups can openly admit the inadequacies of present diagnostics yet use those tests, when negative, to say "You don't have it" and still say "You don't have it" when you test positive. I call that convenient and talking out of both sides of one's mouth. It's as if when they don't like the result, the test is wrong, but when they like it, the test has to be right. As Dana Carvey would say "Well, isn't that SPECIAL?!"
The other, related point is that doctors used to always tell patients to take all of a medication, because stopping just when symptoms cease can cause mutations and greater difficulties down the road. Isn't it soooo odd that this concept is never even suggested about Lyme et al. (or just con-veeeee-nient again)?
Given all the above background, here is my letter to myself and I'll choose to send it for receipt the day before I believe I got the tick bite that derailed my life.
While people focus on rising seas and rising temperatures as the globe warms, things are happening here and now with a direct effect on people. Not 50 years from now. Not next century. Now.
Ever hear of Lyme disease? Nasty stuff with symptoms that don't go away if left untreated. They can persist for life. It's tricky to diagnose, and can be difficult to cure. There's currently no vaccine. It's on the move in the U.S. Marianne Lavelle in Scientific American reports on data that shows the ticks that carry it are spreading far beyond the original locus in New England. Climate Change is the suspect.
While the disease is reported coast-to-coast, it is highly concentrated on the Eastern Seaboard, with a range expanding north into Canada and south through Virginia. Reasons for the spread are not fully understood but include suburbanization and the growth of suitable habitat for the black-legged tick, according to the U.S. Centers for Disease Control and Prevention. CDC believes climate change may be a factor, and this spring the U.S. Environmental Protection Agency added Lyme disease to its list of climate change indicators.It's not a joke to be infected with it.
The CDC estimates that the number of infections is likely 10 times higher than reported, nearly 300,000 new cases per year based on lab test data. Yale University researchers say that 10 percent of the population of southern New England has evidence of a previous Lyme disease infection.
Although the Lyme disease bacteria has an affinity for connective tissue – the reason why joint and neurological symptoms are common – it can cause illness in multiple systems of the body, with symptoms often changing over time. In the past year, CDC has published reports confirming that Lyme disease can be fatal; the bug can invade the heart and, in rare cases, trigger third-degree heart block.And to make it even more horrifying, there are growing suspicions infected mothers can pass it on to their children during pregnancy. Lavelle has the details in a related article at Scientific American.
For many patients who – often unknowingly – wind up with advanced stages of the disease, the most difficult impact is the erosion of mental function.
...Donnelly's doctor believes she did not contract Lyme in the usual way, through a tick bite. Instead, he suspects the disease was passed to her in the womb from her mother, who lived with undiagnosed Lyme disease for three decades.Meanwhile, April Dembosky relates in the New York Times that extreme drought conditions in California are paradoxically increasing the rate of West Nile Virus infection. Shrinking bodies of water mean the birds that carry the disease and the mosquitos that spread it are being 'concentrated', upping transmission rates. There are more bodies of stagnant water as well, ideal for breeding mosquitos. Warmer temperatures make them more active.
It's a controversial claim: While U.S. public health authorities recommend that pregnant women who have Lyme disease be treated with antibiotics, they do not believe that science has demonstrated that the bacteria can be transmitted to a developing fetus. And yet a number of health practitioners who specialize in Lyme disease say that they've seen evidence that gestational transmission is occurring.
The majority of people infected with West Nile virus show no symptoms. Twenty percent get flu-like aches and fever, and only 1.5 percent develop the most severe neuroinvasive form of the disease. Ten percent of those who get very sick, die.Climate Change is having a manifold impact across the face of the earth; 'normal' conditions anywhere are a moving target now. What's serious about the effects on disease organisms is this. Their life cycles are short, meaning they can adapt and evolve more quickly than more complex organisms. They'll have little trouble keeping up with climate change. As ecosystems are destabilized, we are going to see diseases we haven't encountered before, and we're going to see old ones turning up in new places.
So far this year, 12 people in California have died, mainly the elderly and people with underlying conditions like diabetes or high blood pressure. In total, California has the most reported cases of West Nile in the country — 311 cases as of last Friday. Texas is second with 98 cases, and Louisiana is third with 78, according to CDC data.
This may be a factor in the current outbreak of ebola in Africa, turning up as far as it has from previous outbreaks. The possibility will need to be examined. Climate Change will likely play a role in the spread of Chikungunya as the mosquitos that transmit it find their potential range expanding. The potential consequences are even larger when extended beyond mere human concerns. Diseases affect other organisms as well; domestic and wild animals, food crops and native vegetation.
There's a focus on meeting 2030 or 2050 deadlines for various climate change targets, but the truth is we could be facing serious challenges Real Soon Now from an unexpected direction.
The convoluted course of treatment continues. With every potential step forward, a complication arises, including the difficulty in pinpointing causation. How many elements? What should be addressed first? When does this all make sense?
I cannot say nothing is happening. I just cannot see tangible results -- at least not yet.
Fighting is a marathon. Sometimes when I have thought "I got this" I find at best I achieved the end of the beginning, not the beginning of the end.
Let that sink in: the end of the beginning. The person saying this experienced her tick bite in 1996. Sure, the real downward slide began after 2002, but no matter how the chronology gets parceled, it remains a looooonnnnnnngg time.
In the midst of my continued struggle to overcome what to me HAS to revolve around tick-borne illnesses, I fully realize that the lack of a straightforward path affects far more people than myself. Any gain or loss often gets shared because the lot of us share our struggles and report on what helps and what fails. Of course, because this illness possesses a great deal of variation, a singular set of rules on these do not universally apply. We can only endeavor to apply what seems to best fit our individual situations from what resonates from someone else's experience to our own.
Yet why this is so and remains so has as much to do with the politics and economics of tick-borne illness as any unique characteristics of it to an individual patient.
This entry revolves around the continuing saga of treating my tick-born illness(es) and trying to get to a place of wellness in many respects. I am continuing to see a Lyme Literate MD (LLMD) but also attempting various means of physical therapy. Moreover, next month I FINALLY get Social Security Disability Insurance to physically hear my appeal and tell me to my face why I do not warrant assistance, particularly if it proves to be a bridge to something better.
At least I can say that I am really fighting right now. Or, I think so. That is, after months/years of trying to find my way and not knowing if I'm getting it, I feel I am more significantly addressing my problems. Of course, I only see small signs of progress. There is nothing sustained, nothing I would yet call a "game changer" -- a term used by another Lymie about one of the medicines I am currently taking. What will turn the corner? What will turning the corner look or feel like? What is recoverable and what is not? When or do I get to that point?
Part of the isolation caused by this disease is in one's inability to answer or even address these types of questions. I still have no idea where I am going, where I will end up. And yet starting or moving in any direction is better than no changes at all. I do not even know if I am grabbing onto something significant or grasping at straws. I only know I have to continue to try, because I cannot accept where I am or where I have been.
I have wondered what to write about this journey I am on with DH. How have we done it? Because we had to. This is my Lyme resumé. This is more or less just the facts of my illness since 1995.
There are many more things going on in our lives than this: amazingly we travel, sometimes for access to medical help; sometimes with friends and sometimes just us. We listen to live music when we can. We eat good food, and drink good wine, when we can. We garden, we research, we fight for our elected officials. We write.
About what we have learned; about what we love.
We have lost a lot: friends, family, our livelihoods, our home. But given just a tiny chance we live well and savor the moment.
This is my story, so there is no judgement to be passed. I came from the straight and narrow engineering world and western or allopathic medicine. But I have learned some things: there is never a bottom to the humility one so sick must learn; there is no medical stone that can't be turned over, which includes Naturopaths, who look at us in the face, and feel our bodies to see where we need help. It takes a team of medical help and a variety of specialties. It takes money we don't have. It takes energy and will we oftentimes don't have.
Many doctors have saved my life over the years. It has gotten harder to say "Yes!" I'll give it a go. But DH hasn't given up, so neither may I.
Update: I know this is long , and not a particularly writerly read, but it took some courage to get this out in public and just to get out the facts of my last twenty years was a way to break the log jam I have going. Thank you so much
May is Lyme Disease Awareness Month. The CDC recently changed their yearly new case count from 30,000 to 300,000. Because many with symptoms like mine are diagnosed with MS, Fibromyalgia, Chronic Fatigue, ALS, Parkins and other "auto" immune illnesses, the diagnosis of a treatable bacterial disease complex is delayed, leading to intractable illness. As with Borrelios (Bb), the diagnosis of these is with markers and rule outs rather than tests.
Follow me below the Kos doodle to read my resumé. Open your hearts and open your minds, there is no one answer and while I welcome support, please don't pity me.
Sometimes, it feels as exciting as watching paint dry, though sometimes accomplishing the smallest things, like sitting in a FIR sauna for 45 minutes, seems like running a triathlon. I cannot always tell if there is a good pain or a bad pain, if I am getting better or worse. Symptoms come and go and migrate. It is a frustrating existence and can easily grind your life down to practically zero. The point of it all seems distant and perhaps non-existent
I think there is a plan going forward. Can't see where I am going, though.
I just discovered a tick on my back, where it has happily been sucking my blood since last Sunday, when I fell while I was hiking in the woods near Williamsburg VA. (Don't ask me how the damn thing survived notice for several previous showers.) Should I go to the ER right now? I have the bug. Of course now I feel itchy all over :(.
Well, my doctor's office night staff said I should go. So any advice about what I should ask about would be very welcome.
Since at least one person slammed me for my first diary post, I will post something of current importance to me.
Dr. Richard Horowitz wrote a very long book on chronic illness, specifically Lyme and other infections (co-infections) that can be transmitted by a single tick bite. If you do not know anything about this issue, you should. The number of cases has been vastly under-reported (even the CDC admits this) and the fact that sufferers have been either ignored or dismissed has made this a crisis.
There are various reasons for the lack of useful therapy, usually tied to money and politics. But for those who think chronic Lyme is not real, I dare them to spend a day with me and tell me my difficulties are "all in my head" or relate to some other diagnosis which has even less to support it than the Lyme/Babesia diagnosis has. If it wasn't for the ability of people in my shoes to converse with each other, I don't know how many of us could survive, let alone get better.
Dr. Horowitz may perform an invaluable task -- or even tasks -- via this book. First, he changes the conversation about Lyme to one of chronic health problems in general. He calls the whole gamut of health problems Multiple Systemic Infectious Disease Syndrome (MSIDS). That is, I think he is getting at why many of these conditions mimic each other. They affect your immune system, your thyroid levels, your adrenal glands, your hormones. Other doctors found evidence of problems like this in myself but neither they nor I put together that these things form an overall coherent picture and all of these aspects need to be improved for me to get better.
Second, he provides a questionnaire that allows the reader to take an inventory of their health situation. The survey allows you to assess the likelihood that you have been exposed to Lyme (and/or co-infections). The test taker needs to get at least 46 points to think the probability is high. I took it online first and got 82; when I could write in my own personal book copy (and better keep track of answers), I got 90. Think that's high? Nope. Versus some I am a piker. One poster told me she got 138 points! Yet I wonder if even the 138 walks better than I do.
Finally (at least thru the first part of the book), Dr. Horowitz provides a map matching up complaints with possible problems and suggestions for diagnostic tests to demonstrate the source of a specific medical complaint. I am hoping to photocopy these pages, take them to my own general doctor, and we can match what is indicated and what could be tested if the information is not already on my chart. That is, if you have Candida in your digestive system, antibiotics won't make you a lot better. The same can be said of a B-12 deficiency. Or adrenal fatigue. Or hypothyroidism. And so on.
The Washington Post seemed to slam this book and I think the reviewer not only had zero experience with this kind of health problem, she lacked sufficient intellect and/or empathy to make sense of the book (which has a great number of references, making it far more than a collection of one doctor's observations). When a reviewer becomes alienated like that, the writer can take it out on someone else. Moreover, Dr. Horowitz is one of the brightest minds working in a hostile situation because this is a politicized disease -- so it was pretty easy for this "journalist" to find "reason" to complain. If you know someone with ANY chronic condition, suggest they take a look at this book or read it yourself. I have definitely rethought aspects of others' diseases and my own chronology based on just the limited amount that I've read. I have also recently had a few chances to hear him speak (webinar, YouTube -- for example). I even think it is possible that people who suffered/died in the past of various ailments may well had Lyme, like my own grandmother.
(I have an undergraduate journalism degree and saw a resentment become mockery directed at myself when participating at a history conference as a grad student; the reporter was over his head and resented that he didn't understand that even historians have "shop talk" that he wouldn't understand easily. I became one of his targets, perhaps because I actually tried to help him.)
Yesterday, I received my DailyKos Community Quilt! I've posted a thank you diary here. I was excited and wrote it last night and posted late. Now, I'm concerned that all the lovely people who contributed won't see it. Will you please give the diary some love?While I'm not a big fan of the governmental system we have in place, I do get concerned when people think we don't need a government, at all. Or that no one should need help from the government. The meme that people should just rely on "community" feels like false logic. Isn't the government our largest community pool of resources? Are we not, as a nation, a community?
Beyond the narrow use of the word "community", there is a real need for a government, which represents all the people and has the power to protect the vulnerable. Here's my one little lame example of why: