Lyme Disease SUX. A Journey from Fear to Action

Redirect to my new blog

2008-10-22T12:30:00.002-05:00

Michael showed me a nifty new blog tool that lives on our own home server, so I thought I'd move it all over to there, giving me the opportunity to blog on not just this one subject, but other musings and brain farts as they come. So the link to it is here. I hope if you've found this humble beginning worth following, you'll join me over there for more rants, raves, and general ramblings along with any and all Lyme disease information and advocacy that I can muster. And of course, you can also read my wonderful husband's blog on our home website, www.xspectre8.com. He does not speak of Lyme very often as it can be a source of great emotional distress to him, but occasionally he does. I hope to "see" you there!

Fox News reporting on Lyme

2008-10-20T01:02:00.002-05:00

Well as much as I dislike the tone of Fox News, I must say I'm very impressed that they are actually covering Lyme Disease. Check out the report. The report says that there are now more cases reported annually than HIV.

All the more reason for us to be excited as we are going to see the film tomorrow in Nashville. I'd have more to report, but it's late and I have a long drive tomorrow. I'll report back when we get home.

Good News/Bad News

2008-10-14T17:20:00.002-05:00

Well, the bad news is that I will not be organizing a showing of Under Our Skin at the Studio on the Square because the film is no longer available for such showings. The good news is that this is due to the fact that the film will be given nationwide release in 2009. So rather than work on getting a showing together, I'll be working on my presentations for Turn the Corner. I'm hoping the film will generate enough interest in presentations around the Mid South.

I'm just hoping that the film gets any showing at all in Tennessee, especially since many doctors still hold to the belief that "there's no Lyme in Tennessee." Idiots.

CDC Study Reveals Large Rise In Lyme Cases

2008-10-11T03:28:00.003-05:00

The CDC has posted its data on new cases of Lyme disease reports, and the results are not pretty though not unsurprising for the vast majority of Lyme sufferers and LLMDs out there who have been trying to gain wider attention for this disease that continues to go largely ignored. Even Montana, the one state left in the union which had never reported Lyme disease before, has finally joined the ranks with the rest of the US. You can see the actual data here.

Below is a quick rundown of the states most heavily hit:

Top Ten Lyme Disease States (2007)

New York: 4,165 cases
Pennsylvania: 3,994 cases (23% increase over 2006)
New Jersey: 3,134 cases (29% increase over 2006)
Connecticut: 3,058 cases (71% increase over 2006)
Massachusetts: 2,988 cases (109% increase over 2006)
Maryland: 2,579 cases (106% increase over 2006)
Wisconsin: 1,814 cases (24% increase over 2006)
Minnesota: 1,238 cases (35% increase over 2006)
Virginia: 959 cases (169% increase over 2006)
New Hampshire: 896 cases (45% increase over 2006)

Other Large Increases in Lyme Disease (2006-2007)

District of Columbia: 87% increase (116 cases)
North Carolina: 71% increase (53 cases)
South Carolina: 55% increase (31 cases)
Delaware: 48% increase (715 reported cases)
Maine: 57% increase (529 reported cases)

Of course I will point out here (as I often do) that the CDC refused to recognize Michael as a positive for Lyme disease because, and I quote, "the doctor did not run the tests in the correct order." So, even though his blood work came back full of the spirochete, the CDC did not include him in their data. I am sure that Michael is not the only person this has happened to. So one can only assume that even this startling data showing a 37% increase in Lyme cases nationwide is overly optimistic.

Today Michael confessed to me something I'm sure has been plaguing his mind for some time now. He always plays his hand close to his chest when it comes to sharing pain or fears, but I suppose the increase in pain lately has caused him to become more vulnerable. He admitted to me his fear that with the current economic crisis looming and the very real possibility that this will make effective treatment for Lyme even more difficult to obtain, he may die from the complications he's been experiencing. It sent chills through me, and the worst part of it was there's nothing I could say to assure him that his fears are unfounded.

2008-10-09T19:02:00.003-05:00

Not much to report on the activism point. I did send the letter to the Oprah show, but who knows if it will ever be seen. At least I did that much. It's hard to find a balance between getting the attention we need without appearing like a tin hat wearing nut job. So I'm trying not to be too overzealous. No easy feat considering this disease that I don't even have has stolen my life and wrecked my husband's.

As far as other stuff goes, there's a new development in Michael's situation. He's been having some pretty awful pain in his hip for the past couple of days that's kept him feeling pretty icky. So far the only thing helping is Neurontin, so he's taking enough of that to choke a horse before bed so that he can sleep. This leads us to think he's dealing with a new case of neuropathy. This is not good news as there's really nothing to be done about it, but he's taking this new development as well as can be expected.

We're hoping to take a trip to Brighton to visit my dear friend Sylvia and her new husband John in December. It all depends on a) if we can find a farm sitter, b) if Michael feels well enough c) we can afford it in this economic apocalypse. He's only been overseas once (on a transatlantic cruise), and felt so bad during that trip that he never got out of the hotel or off the ship. Since we'll be in one place the entire time he'll hopefully feel good enough to get out for a few hours here and there. He's a military buff and the RAF Museum and Imperial War Museum calls. I think that will be my day alone to seek out more green men. It's something I've been fascinated by ever since I first went to England.

Anyway, fingers crossed that we get to go.

2008-10-06T21:27:00.003-05:00

We had a nice birthday celebration for Michael on the 3rd, especially considering he was supposed to long be dead due to ALS. I was sorely tempted to call the chief neurologist of the Carolinas ALS Center to just say "You said he'd be completely paralyzed by now. Now six years later he's 40, out of the wheelchair you prescribed for him, and he just built a chicken yard! In ya FACE! " But I guess that would be petty. Oh, who am I kidding?? I'm petty! Petty, I tell you!! I can't help it. He was the ass who never returned our calls once we tried to tell him the good news about a possible alternative to the death sentence of ALS. He could have passed this info on to his other patients. Instead he chose to bury his head, rake in his research dollars, and watch his patients continue to die slow agonizing deaths. What a poozer.

Things are moving along in our plans to have the Under Our Skin showing in Memphis. I've selected a theatre, Malco's Studio on the Square. It's a quaint little art housey type theatre. I've contacted the studio that created the film, Open Eye Pictures. Now it's all up to getting the details together. I've decided to donate proceeds to the Turn the Corner Foundation to assist them in the program for continuing education of medical professionals about Lyme disease.

I came across a wonderful article written by Amy Tan today. Her story is frighteningly similar to Michael's, as was Daryl Hall's. He was interviewed by Fox News recently. I'm not a big fan of Fox News in general, but the interview is worth watching.

On a tiny note, I got my Lyme disease awareness bracelet today. I'm wearing it proudly and hoping lots of people will ask me about it. It's hard to miss, being lime green (of course). You can get yours from the Lyme Disease Foundation.

2008-10-02T10:26:00.003-05:00

For some reason something has changed again. I'm concerned Michael may have an active infection again. Unfortunately there's not a doctor here that will take his case so we have no way at present of finding out. But his blood pressure is spiking dangerously like clockwork every night so far since we got home from the hospital, he can't get out of bed, he's in terrible pain, and his heart rate never goes below 95 bpm. It's been as high as 117 bpm. I suspect this is pain related. But since he left the pain clinic (you'll have to ask him why he did that because I disagreed with the decision), he has no alternative to ease the pain.

He's been bedridden for four days now. I don't really know what to do or say, so I'm just trying to leave him alone and do my thing. But I'm really worried he's getting sick again. Maybe this wasn't the right time for me to start trying to be more active outside the home and try my hand at activism. I feel guilty for leaving him for any length of time, but guilty for not doing more. It's a vicious circle of self doubt, guilt, anxiety, fill-in-the-crap-feeling-blank.

Dr. Oz to feature Lyme on Oprah's radio show!

2008-10-01T19:55:00.002-05:00

I'm very excited to hear that Dr. Oz (medical expert on the Oprah show) is planning on highlighting Lyme disease on their radio program. They are also taking suggestions for stories on Lyme. I've banged out a rough draft just now that I will be sending to the show. Here's the rough draft:

---------------------------------

Dear Oprah and Dr. Oz,

I am writing to you on behalf of my husband and countless others who are suffering from a condition that the medical establishment refuses to recognize as even existing, chronic Lyme disease.

I wish our story was an unusual one. I wish that my husband was "just a malingerer" as one doctor actually believed. If that were the case, maybe there would not be so many others suffering and dying silently either by complications of the disease or by their own hand due to the incredible misery and pain this condition causes.

We are a true "When Harry Met Sally Story," having been coworkers and friends for over a decade before our first date. We worked together at the Knoxville Zoo. Michael was Chief of Security, a very active job that involved constant walking and cycling through year round and in whatever weather East Tennessee care to throw at him. When we married Michael was still an active man. His favorite activity was backpacking. He was training in AiKiDo and would soon achieve his brown belt. He cycled and ran for fitness.

Two years into our marriage we went on a backpacking trip that would change our lives together forever. Michael was bitten by a tick and got the classic "bullseye" rash (known as Erythema Migrans. Within 24 hours he became ill with fever and flu like symptoms. He went immediately to his Primary Care Physician who told him he had the flu (in summer) and the rash was simply Jock Itch. Michael, trusting this doctor, went home with instructions to take it easy for a few days.

But he worsened daily. Finally he went back to the doctor insisting that he be checked for Lyme Disease. The doctor refused to run the test, saying it was "too expensive and not necessary because there's no Lyme Disease in East Tennessee." He gave Michael a weeks' supply of antibiotics on the presumption that Michael had Rocky Mountain spotted fever. Michael was almost 100% better in less than a week. We breathed easier, believing we had the all-clear.

A few months following, Michael became weak in the legs and had trouble controlling them. Many doctors, many tests and many tears later we found ourselves in a neurologists' office. We knew immediately that something was wrong when she came in and did not look Michael in the eyes. That was when she delivered the news that no doctor wants to deliver and no one wants to hear. Michael had ALS (Lou Gehrig's Disease) at 34 years of age. It was time to make plans for our last vacation together and make final plans because he would most likely be dead in less than three years and certainly gone in five. My first response was "What do we do now?" And she replied "If I were you, I'd get a second opinion right away."

We got second and third opinions. Duke University concurred with the ALS diagnosis, while the Carolinas ALS Center diagnosed Michael with Primary Lateral Sclerosis. If ever there could be anything worse than ALS, it's PLS. The doctor blithely told us that though Michael would be completely trapped in a body so paralyzed he would not be able to blink or breathe on his own he would live, in his words, "a nice long life." As if this should be taken as good news! It was horrifying. It was the first and only time I have ever actually collapsed in public. I can't even imagine what it did to Michael. We've never even spoken about it.

Throughout this entire period we had always asked "What about Lyme Disease?" Each and every time we were told "Your labs are fine. You don't have it. Besides, there's no Lyme disease in East Tennessee." No one mentioned the test they had performed was a test known to give false negatives (the ELISA test). When a Western blot finally was done it also came back negative. So we were told basically that we were in denial about his ALS/PLS diagnoses. With so many negative tests we had no choice but to accept our fate. As Michael rapidly declined, I'd call the office frantically to report a new fall, his loss of the use of an arm, his sudden move from cane to wheelchair to electric wheelchair..all within one year. And every time the answer was the same; "I'm sorry, there's nothing we can do for you. But call us if you need anything." The only answer we ever got was "Maybe it's time to talk about the respirator and PEG feeding tube."

By this time my beloved was not able to eat a meal without resting due to the fatigue. He couldn't lift a fork full of food with his dominant hand. His voice was so quiet he was almost completely inaudible. He could not walk or stand at all. He was confined to an electric wheelchair. He could barely dress himself, and it took over half an hour to do so. All in the space of one year since diagnosis.

We were literally preparing for Michael's death (he had refused the tubes and planned to die) when we got a phone call from a former coworker. He told us he had a friend who had weird neurological symptoms until she saw a particular doctor who had begun treating her for Lyme Disease and she was suddenly improving. We had nothing to lose at this point so we made an appointment. This was the appointment that would save my husband's life. This doctor was indeed Lyme literate. He was worried about Michael's delicate condition by this time, so he referred us to a physician who specialized in Lyme disease in Pennsylvania agreeing to continue to see Michael locally and help in any way he could. Within a month we were in the Pennsylvania office. Imagine our shock when we wheeled Michael in and the first thing the doctor said was:

"You have Lyme Disease. I can tell by the coloring in your face."

He began treating Michael presumptively with antibiotics. First by mouth, then by injections. While the treatment was ongoing the doctor repeated the Western blot test at Igenex labs and Medical Diagnostic Labs, both known for their reliable Lyme testing procedures. The reasoning was simple. The doctor believed that because the Lyme had gone untreated for so long, Michael's immune system was compromised. Though his body was most likely full of the spirochetes, his immune system no longer manufactured antibodies on its own. This was the reason behind the negative tests. About six months of this repeated procedure the proof came. Michael's immune system kicked in, and suddenly he tested with an extremely strong positive for active Lyme disease. Now the insurance company and medical establishment could not deny that Michael was indeed suffering from undiagnosed and untreated Lyme disease for over two years, and quite possibly much longer. He was referred to a doctor in New Jersey who would supervise treatment with IV antibiotics.

The treatment was agony. Michael's pain was excruciating. He once collapsed on a plane coming home from treatment. But he never gave up. He got weaker and weaker, and I feared for his life.

But suddenly one day he noticed a minuscule change. He could use one of his fingers much better than the day before. Then the hand itself became more dexterous. Tiny daily improvements continued until now, in 2008, he would appear like any other guy if you saw him on the street. He uses a cane only when his pain is particularly bad. And on good days he even gets out and works around the farm.

He still suffers a permanent disability that we suspect may never abate. Once a voracious reader, he is now functionally illiterate. Though he may be functioning one day, he may not be able to get out of bed the next. This has been the hardest part for him. My husband began his working career at the age of six. To not be able to work now is heartbreaking. As for me, I don't care. I'm just glad he's still with me!

This may sound like a miracle. But what I am asking you to shine a light on here is that the politicizing of this disease is killing patients and driving Lyme Literate doctors out of business. Doctors are persecuted for treating patients exactly as these doctors did Michael. Yet this treatment is precisely the reason he is alive today. These doctors need support. They need research dollars. They need a voice. On a personal note, I fear for Michael's continued recovery. Should his doctor be driven out of practice and Michael suffer a relapse, there will no longer be treatment available to him. This is what keeps me awake at night. Moreover, the knowledge that Lyme disease is not rare but a silent epidemic that is being ignored or misdiagnosed is truly disturbing.

Oprah and Dr. Oz, won't you please consider this deplorable situation in your upcoming programming not only on the radio but on the television program? I promise you this story is big enough for an entire on-air episode, probably more. You will be shocked at the number of stories just like ours that are out there, begging to be given a voice. Please help these doctors and their patients have the treatment that is saving lives continue to be available. Chronic Lyme Disease exists. My husband is living (and today walking) proof.

For reference I offer the following news stories written on Michael. I also encourage you to view the movie Under Our Skin. If these stories don't move you to action I honestly don't know what will.

http://www.redorbit.com/news/health/756026/man_rebounds_after_als_death_sentence_replaced_by_lyme_treatments/index.html

http://lymeblog.com/modules.php?name=News&file=print&sid=693

And for further information I have a blog on the particulars of our story at lymediseasesux.blogspot.com.

Thank you so much for reading this far. I realize it's long winded, but I feel compelled to reach out and be heard. Not just for myself and my husband, but for all the physicians still brave enough to treat this very real and very serious health risk.

Sincerely,
Claire B Culver, wife of Michael A Culver

2008-09-30T21:01:00.002-05:00

Once again, a nervous moment. Michael's blood pressure is now 176/117 with a heart rate of 106. He's also having chest pains. He's taken his rescue med (Tenex) and his nightly BP meds, so we are giving it an hour to go down. But if it does not we are taking him back to the hospital. In the meantime I'm just trying to not panic and hover over him. This is a major hardship for me. I don't know why I'm such a hoverer. I guess I have a bit too much of my mom in me.

I contacted the local Malco art house yesterday and am waiting to hear back from them with a contact person for renting the theatre for a showing of UOS. Not a huge move, but a start at least.

A Trip to the Hospital

2008-09-29T15:39:00.003-05:00

Michael had another of his unexplained blood pressure episodes last night. He was just sitting and watching TV when he was hit out of the blue with a terrible headache and chest pains. We took his BP and discovered it was 159/105 with a pulse rate of 96 bpm. He took his rescue medication (Tenex), but it was clear that this was going to get far worse before it got better. So we went to the ER. The long and short of it is, they got his BP normalized and sent him home just as they have every other time.

But what may prove to be different this time was that the nurses actually relayed Michael's Lyme Disease story to the doctor before he came in, and he did not seem to think we were from Mars, insane, or stupid. He listened attentively and for all appearances seemed open minded to the idea that this was not the garden variety patient. After a consult he agreed to take Michael on as a new patient and to help find us the specialists we may need for his condition(s).

So though I hate that Michael had to go through another episode, at least this time we may have come out of it making some progress in his treatment.

New domain registered

2008-09-26T14:35:00.002-05:00

My current project is working on hosting a viewing of Under Our Skin in Memphis. It's a bit daunting as I really have no idea what to do or who to speak with. For starters, I got on OpenEye Pictures (the producers of the film) website devoted to the film and found a link on how to host the event. The first thing it asked me for was a website and email for contacts and posting information about a viewing for the public to access. So I asked Michael to help me register a domain for just this purpose. But I think I'll try my hand at web publishing a bit to add more Lyme Disease Info and links along with a forum for discussion. We'll see how it all pans out.

As of now the domain is registered, but the page is not yet up. The name of the site is Angerintoaction.org, and over the next few days I'll mess around with it and see what I can come up with.

Michael and I made plans to go to Nashville on October 20th for the viewing of Under Our Skin to be held at the Belcort. We've sent invites via email to our friends and hope to see some of them there. It will be a great night to celebrate Michael's 40th birthday, since he was not supposed to still be alive according to the people who diagnosed him with ALS. His actual birthday is on the 3rd of October. We've got a small evening out planned with the family. He wants to see the movie Appaloosa.

Frustrations gone wild

2008-09-25T20:02:00.000-05:00

For the past couple of days I'd been feeling as if I was quite simply losing my mind. My inability to remember things, focus, or maintain calm along with a constant agitation etc became a real liability. I shared this with a friend who is a clinical psychologist. The first thing she told me was that my level of frustration and barely controlled rage is completely normal under the circumstances. The second thing she told me was that she'd read the news stories about Michael's experience with LD, and seen the trailer to Under Our Skin and had become very angry and frustrated even without having personally experienced this disease for herself. It served to help me feel like maybe I'm not such a bitch after all, but just really really angry and rightfully so.

I haven't done much today by way of activism other than bought a few LD Awareness bracelets to help get the conversation going. I got them off of the Lyme Disease Foundation website. I encourage anyone who's dealing with this disease to do the same if only to create opportunities for education. The link to the bracelet is here.

2008-09-25T01:12:00.000-05:00

Today's been a rough day. Michael's been in a bit of a slump and feeling particularly rough around the edges. His temper is extremely short and I'm just trying to stay out of the way for the time being. I try not to be overly sensitive because I know this is one of the effects of the disease but some days are harder than others. I had a good cry this afternoon, one that was a long time coming. I've contacted the Turn the Corner Foundation to inform them that I am interested in participating in the LEADS program. It's simple really. They provide you with materials and a Power Point presentation to do programs about Lyme Disease for medical professionals or the general public. When I was a volunteer for the AIDS crisis hotline in Florida while in college I particularly enjoyed doing presentations and educating. When I worked for the Knoxville Zoo as volunteer coordinator my favorite week of the year was training new volunteers. So this is right up my alley. And of course it appeals to my inner drama queen as a former theatre major at FSU (way back when I believed I actually had talent).

So far I've heard back that they are quite interested in having me join up. Will keep you posted on the training and how my speaking engagements go. Michael has been approached before by local clubs to speak about his experience. I think we'd make a good team. I think on our next nasty day when we don't want to go outside I might encourage him to start working on a presentation of his own.

A bit of background of course, for those who do not know us or have stumbled only recently onto this blog. Here are a few links that chronical the beginnings of our struggle. I encourage anyone in the press to contact us as well and we'll be happy to share the story again. Anything to get this story out and into the open!

I share these links simply to show the reader that I am not just making up some story for the sheer pleasure of stirring up trouble or garnering attention for my family.

Michael's first diagnosis of ALS (aka Lou Gherig's Disease) was written about in the Knoxville News Sentinel. You can find the article here. We got the initial diagnosis from a brilliant neurologist in Knoxville by the name of Berta Bergia. She is really quite good and has since become one of our biggest supporters in the fight against Lyme Disease. Her initial diagnosis was seconded by Duke University, then again by the Carolinas ALS Center.

After almost a full year of Michael's rapid decline, we still refused to give up. We both distinctly remembered Michael being bitten by a tick and having the classic bullseye rash of Lyme, officially known as Erythema Migrans, before ever getting sick. But no doctors would listen. They told us we were both in denial of Michael's diagnosis. Michael continued to decline rapidly. Soon he was in an electric wheelchair and had trouble speaking and feeding himself. The talks began about inserting a feeding tube and respirator.

Fortunately for us a friend through Michael's work said he knew of a doctor who might be able to help us. Sure enough, he did. He did so by listening to us. Eventually he referred us to a lyme literate doctor (LLMD) by the name of Gregory Bach, who also happened to be the Congressional Medical Advisor on Lyme Disease. After the diagnosis was confirmed Michael became the patient of Dr. Richard Rhee, one of the most amazingly compassionate and dedicated physicians either of us have ever had the pleasure to meet. The article about this development (also from the Knoxville News Sentinel) can be found here.

And finally, the reporter who had interviewed us for these stories was quite interested in the situation as her own beloved grandmother had recently passed away from ALS. She couldn't help but wonder, had she really died of ALS? She wrote another article about the appalling lack of information on Lyme Disease. It can be found here. You can note in the photo that my husband is standing and playing with our dog. A far cry from sitting in an electric wheelchair just one year earlier and waiting to die, don't you think?

Yet even in the face of this obvious change and the blood work proving the presence of the spirochete that causes the disease, the CDC refused to recognize him as a postive Lyme Disease patient. Why? Because in their words "the tests performed were done in the wrong order. So he doesn't count."

I wish I were kidding. But this acutally happened. The CDC complains how Lyme is under reported. Hmmmm I wonder how that could be. Cue eye roll.

Angered into Action

2008-09-24T01:00:00.000-05:00

Well this is my first ever entry, and it's full of vitriol. But I guess that can also translate to being inspired. Sometimes a person has to become so angry that they can no longer stand being silent. And I will not. My husband suffers from chronic Lyme Disease and is currently in decline. The decline has been slow and agonizing and without adequate medical care. This is due to the fact that we moved away from his Lyme Literate doctor (LLMD) to help take care of my husband's ailing mother. For quite awhile he was making the monthly journey back to see his doctor and the pain clinic, but those 8 hour road trips just took too much out of him. We found an LLMD here (after over a year of searching) and were thrilled. However, we were told yesterday by the doctor himself that "no one will take that case, it's too complicated." Meanwhile my husband continues to get sicker and sicker both in body and spirit. I am so disgusted with the insurance industry right now I could literally slap the face of anyone in it. For it is THOSE sons of bitches that have done this to my husband. Not the doctors, for the only ones brave enough to treat Lyme patients are being persecuted out of business. No, it is YOU in the insurance business who are happily condemning people to death by slow agony or by their own hands due to the pain and frustration. Like I said, vitriol. So my only course of action (one that's legal and won't destroy what good kharma I have left) is to raise awareness about this disease and the disgusting lack of care so many are receiving due to nothing more than corporate greed. Do you hear me, health insurance companies? Do you hear me CDC? No, of course not. But one day you will. You'll hear the millions of people with Lyme Disease just as you did those with HIV/AIDS when they too had finally had enough of being ignored while they died slow horrible deaths. And be prepared for that day soon. By YOUR OWN ADMISSION, the Lyme Disease has risen over 220% in less than five years. I wonder how long it will be before your son or daughter gets this diagnosis, only to find that your own precious company has driven every LLMD out of your area? How long before you yourself are writing such a journal or begging a doctor to put his/her career on the line just to save the life of your loved one? Or your own?