It is 3 am Pacific Standard time and I am wide awake. One of my doctor calls this time of insomnia in patients as "Lyme-time". This is usually in the middle of the night when you are desperate for rest, to get through another day. Unfortunately those little critters have different plans. Lyme time is when those nasty bugs wake up and create more havoc-after a year of this, I don't need more havoc! I want to scream at them to "GET OUT", but they are great at camouflage-and besides some doctor, somewhere will state that my problems are psychological in origin. Ha! To help me get through the insomnia, I have become an avid watcher of the Television show, "House". http://www.fox.com/house/
"House" is an entertaining and well written show about a group of hospital doctors that tackle complicated diseases and discover the underlying cause of the patient's illness. Gregory House, the obnoxious infections disease doctor, is played by the British actor, Hugh Laurie. I ache for a doctor like house in the Lyme disease community. House we need you!
As an information junkie, (at least enough to make me dangerous), I have been doing research on Lyme disease. All of the research, the internet sites, the books, are somewhat contradictory. It is very confusing to get some clear answers and figure out the right treatment protocol, particularly when I have brain fog from the disease.
What is clear to me from the research is that our country has a major Lyme disease problem. The disease has developed in every state. If I look at the emails, the twitters, the phone calls I have received in the last few weeks-Lyme exists everywhere. The problem is not being taken seriously by the medical establishment. Fellow "Lymie" and successful author Amy Tann says: ""I now know what is the greatest damage that Borrelia has caused: It is ignorance." http://www.canlyme.com/amy.html
When surfing the net I found some information on Dr. Kinderleher, a New Mexico based doctor who appeared on the Today Show. http://today.msnbc.msn.com/
Based on his comments during the show, a paper was developed by Dr. Ralph Stricker, a San Francisco based Lyme specialist. http://lyme.kaiserpapers.org/drdan.html
Some stats from Dr. Kinderlehrers comments on the Today Show:
• Lyme disease is an epidemic, already the fastest growing in the US with new cases surpassing AIDS.
• The epidemic proportions of the illnesses are staggering, but are being minimized by the government and insurance industries because of financial obligations.
IF this doesn't scare you, the fact that these comments were made in 2002-should! And still the disease is largely ignored close to a decade later.
Testing for Lyme:
Let me explain a little bit about the testing procedures that diagnosis Lyme disease. Even in 2009, we are far from getting proper testing in place that addresses the many issues surrounding a LYME diagnosis.
The ELISA test. This is the least expensive and easiest to perform. This test detects the antibodies made in response to being exposed to Borrelia burgdorferi (Bb). This test misses 50% of patients later found to be positive for the disease.
The Western Blot test. This is a map of the different antibodies that the immune system makes to specific proteins that are tested, some specific to Bb and other specific to the Spirochetes. There is a disagreement regarding how the Western Blot is interpreted. The CDC developed criteria that exclude 70% of symptomatic children that had confirmed a bull's eye rash. Recently a few labs that specialized in the diagnosis of Lyme disease developed better criteria. I went to one of these labs after my initial two false negatives.
Other forms of testing include the Polymerase Chain Reaction, Lyme Blot essay, blood examination and bacterial culture. All have varying degrees of success or failure depending on what stage the disease is in. To read more on this: http://columbia-lyme.org/patients/ld_lab_test.html
Still will all these tests up to 30% of patients still have negative results!
Controversial Treatment:
One of the controversies surrounding treatment for Lyme is the extended length of time one is prescribed anti-biotic for treatment. The reason I am told and Lyme doctors concur, that long term antibiotic use should be considered when Lyme disease is suspected is because of the following:
• Bb divides very slowly and often has periods of dormancy during which antibiotics will not kill the bacteria.
• Bb can invade the immune system and hid within the cells.
• Bb can actually coat itself with host membranes to avoid detection by the immune system.
• Bb can also exist in three forms, Spicochetal, L-Form and Cystic form, two of which are relatively resistant to antibiotics.
INSURANCE COMPANIES DENIAL of Lyme disease is staggering. I am old enough to remember the days when insurance companies actually paid your medical bills and cared enough to not make the process work. WHAT HAPPENED? Currently, Insurance companies have adopted guidelines reflecting short term treatment approaches, which are governed by cost-containing considerations. However the legal standard of care for treating a condition is determined by the consensus for physicians who actually treat patients-not by treatment guidelines. This has not happened with Lyme disease.
One survey found that 57% of responding physicians that treated Lyme disease did so for 3 months or longer. Brian Fallon, MD and director of the Lyme and Tick borne disease center at Columbia University: http://www.columbia-lyme.org/about/director_message.html notes that for over 3400 patients screened at Columbia University study of persistent Lyme disease, the mean duration of IV treatments was 2.3 months and the mean duration of oral antibitiotics was 7.5 months. http://www.columbia-lyme.org/
Insurance companies have placed their full weight of their economic clout behind the less expensive short term protocols. The longer term options are discredited as experimental or "Not evidence Based".
I am trying to go back to sleep now, hoping for a wonderful dream. In my dream, I am finally able to get admitted and cared for in a hospital. As I lay in bed, Hugh Laurie walks into my hospital room. (Of course, you know this is a dream, since I can't find a hospital that will take a "Lymie"). He walks over to the bed, says something obnoxious, rattles off instructions to his team, and moves towards the door. Before he leaves, he actually gives me a brief smile and I thank him. I am not sure he has constipation or he actually is responding to my gratitude. Then he says, over his shoulder as he walks away. "I am always right". Perhaps he took some instruction from the American Medical Association after all.
*Special thanks to Dr. Metzger and Harmony Women's Health for providing access to their research for this blog. http://www.harmonywomenshealth.com/
(A possible hint for other lymies though....I will NOT however be on the computer at that hour, unless I want to be up ALL night. If I stay away from electromagnetics after 9 or 10pm, I can usually go to sleep by 3 or so). Sigh!
I agree with the comment someone made that suicide can be a result of this. It is not a lightweight disease.
At least I know now where I can find company. Keep up the excellent writing. It's important to let the public know about the abuse we are experiencing at the hands of "doctors", the IDSA and the insurance industry. As I'm sure you know, the politics of Lyme are as nasty as the disease.
Take care of yourself.
Thanks again.
Thanks for another excellent post.
A friend of mine with a (different) chronic illness refers to "House" as medical pornography for those of us who are sick (with chronic or difficult to diagnose conditions).
. After many years of excellent health, when I got sick, I was shuffled from specialist to specialist (by the way, often having to wait weeks to see each one). After being give 7-12 minutes of their time (and some really, truly were barely hearing me), I was offered painkillers and antidepressants.
When I really pushed, I started getting differing diagnoses from doctors (some from their own referrals). An infectious disease doctor said I had some atypical autoimmune disorder, sent me to a rhuematologist, who disagreed. The ID doctor wouldn't speak to the rhuemetologist, and somehow it was left to me to try to decide who was 'right'. And on and on.
When I have seen "house", the premise that a team of people will try to come up with some sort of solution, be at least somewhat understanding (if not empathetic), and spend some TIME pursuing an answer...I mean, that is so incredibly far from my own experiences.
Trying to explain that I was getting to a point of disability, after a long slide into it.....seemed to mean nothing. Explaining that I had TRIED antidepressants, and was still increasingly sick.....meant very little.
In a very strange way, the world portrayed on "House" is as much a fantasy as Cinderella.
True, the doctors do leave you to figure out what to believe; whether you have Lyme or not, and to figure out the method to treat the disease. A person almost has to go to Medical School just to figure out one's own health issues! : (
I went off the drugs for a few weeks, and began to feel better. The scarey part about stopping the drugs, was thinking about the Lyme taking a further hold, and I did not want to get sicker...again. IT is hard to figure out the best course of treatment--and as I have said before-patients should not be the ones having to figure it out. Otherwise, what is the point of going to see a doctor? I know this may sound basic, but you are on a pro-biotic, right???
In my experience, I've had way more than my fair share, and from all I've learned you want to be VERY careful about stopping and starting. I know first hand just how bad it can get but instead of going off the antibiotics (that are working if you are herxing) you and your Dr. can lower the dose to lessen the herxing rather than stop all together. Every one is different and there are times when you may need to stop all together but when you do you run the risk of making the organisms stronger and making at least that antibiotic useless for you.
I think of them as intelligent as they are able to hide and transform and do so to not be killed off, much like resistant strains of staph for instance which have become stronger because they have been exposed to various antibiotics and not been completely killed off so they develop resistance the way we develop antibodies. The ability to hide and protect themselves sometimes with other organisms is why pt's are often on multiple antibiotics.
Michealene is absolutely right about the probiotics and while it seems basic once you know about it so many Dr's don't either know or tell you about it. The ID never said anything about it. The Lyme specialist I finally ended up with was the first to tell me about probiotics and "prescribed" them as well as several other supplements along with the antibiotics etc.
After doing my own research, even under the care of an LLMD, I found out one of those LLMD recommened supplements was causing all the G.I. distress. I bet you're on it: magnesium.
Magnesium was needed to quell the twitching. But the twitching was induced in part by antibiotic overload, which can cause you're body to become deficient, which can in turn induce the twitching. Scary stuff. Both the Lyme AND the treatment.
The point I'd like to make is we can complain up a blue streak but that doesn't change the fact that NOTHING and I mean NOTHING is being done for us. Any of us. Rich or poor. Famous or not. We're all sick and I don't no a soul who's cured on these boards. Yet.
As for Brian Fallon's research that's great if you can pony up the 1000s to participate. What is up with that? What is up with all of this?
Thanks for writing about it. I just hope something comes of it. I'm sick of being sick. And I'm sick of theories and controversies and of arguing with doctors who don't care about helping people or getting to the bottom of squat. Seen enough of it in my life. Not just with Lyme but with my family's cancer. Doctor's let stuff slide. They don't do their jobs. I used to respect docs, be in awe of them. And then I got Lyme.
I, too, am a Lymie, ten years into my diagnosis. Infected in Western Sonoma County, CA in 97. I had a third relapse last spring and am 9 months into a 20 month antibiotic treatment. 60 days of IV and then 18 months of orals. We're switching the orals to a different class every two months to try and attack it in it's various forms.
I've been quite ill, but that means that the treatment is working. We have to get worse before we feel better.
I appreciated how clearly you discussed the 'shapeshifter' qualities of Borellia Burgdorferi. A few weeks ago I sent an e-mail to my Representative, Kurt Shrader OR, regarding HR 1179 and am inspired by your article to pick up the phone and make a call, too. A few years ago our former Rep, Darlene Hooley, was a co-sponsor to a Bill that unfortunately died in commitee.
Perhaps if everyone called their Representative we can get this new Bill passed. http://www.lymediseaseassociation.org/HR1179Text.pdf
Thank You again!
Nancy
Oregon Coast
Because of the medical/insurance/government deliberate avoidance of the issue, ticks are now in suburban places that were recently "safe." This avoidance has also meant there is a dearth of Lyme-literate doctors (LLMD). And LLMDs are increasingly pressured to treat not only conservatively but as if Lyme was just poison ivy, thereby creating more LLMDs who don't take insurance. My LLMD is giving up his/her practice rather than risk losing his/her license, because he/she treated Lyme patients with intravenous antibiotics once, I guess, too often and was flagged by the hospital (I won't even risk IDing the doctor by gender). So I have to trek two hours to the nearest LLMD that takes insurance.
Insurance companies are killing people. That is not an exaggeration. If you can't find an LLMD that takes insurance, and you can't afford to go to one who doesn't, then you are SOOL. This kind of deliberate ignorance is rarely seen with other high--volume illnesses, e.g. If you are diagnosed with cancer, you get treatment and there are a lot of options. Why not for Lyme?
I'm thinking about biting the bullet and doing the communte instead, esp. if this "appoitment" messes with my window.
I sympathise and am happy to share if you want more of my experience.
As my heart is now beating irregularly, my breath at times is a struggle and I become more and more tired, I appreciate anything you can do to get the world to notice Lyme and the patients that are suffering.
I was diagnosed in Aug of 2007, after two years of testing and being told that I was having a psychiatric break down. It wasn't until January of 2009, that I learned that Lyme can kill. So, while I've been frustrated and anxious that I would spend a life debilitated, now that my heart has been affected, I'm suddenly aware of how much more grave the situation is. People need to know that Lyme can kill. The three leading reasons:
1. Brain shut down
2. Heart failure
3. Suicide
It's not hard to imagine that we could do a lot to eliminate number 3.....
They have become less of a problem with "zapping" -- which involves a low level electrical current and copper handles and/or footplates. It cost maybe $200. I have tried holding it or having it sit near my chest. It feels funny while doing it but it isn't bad overall.
Also, you might benefit from one herbanists lymeaid supplements, esp. the "enhance the heart" pill which has CoQ10, hawthorne and a few other things in it. They're not great for me because the hawthorne part is aimed at those with higher blood pressure. My is kinda low, so I don't need the pills making it lower. His address is lymeaid dot net.
Hope that helps some. I also take Total EFA based on Dr's advice which may also help. As I recall he gave other reasons for the EFA but I have read since that it can also help with palp.
It is time to get the government of LLMD's backs and let them heal the people who need healing!
Thank you!
I believe cortisone injections had a dramatic effect on how sick I got. : (
I appreciate your stories--you're one of my favs--right up there with Cesca!
Thank you.
: )
* In one study, 1/3 of patients tested in a mental institution showed positive for Lyme.
* A lab researcher has found Lyme bacteria in the brains of 8 out of 10 Alzheimer samples.
* The most money spent on Lyme research has been in its application for Bio-Weapons.
Like the lead in the dishes of ancient Rome, if this disease (and its co-infections partners) is not dealt with honestly and aggressively by our government, God help us all.
4 years ago I was diagnosed with an advanced case of Lyme with came with a side-dish of Ehrlichiosis. I was lucky in that 3 months on Doxycycline seems to have knocked them both out. However I still have some residual paralysis and and constant low-level arthritis pain.
Ticks and their little "gifts" should not be taken lightly by anyone, and if one spends any time outdoors it's in your best interest to get tested for Lyme and as many of these other ticke-borne illnesses as possible at least twice a year.
After a Western Blot test determined that 42 days of doxycycline didn't do anything for me, I want to do the IV antibiotics. I'm concerned the doctor will refuse and want me to see a neurologist because I've had a diagnosis of MS. The neurologist is a waste of my time, however, given all I got were Big Pharma samples of lexapro and advice to see a counselor. Big Deal!
Have you had this problem? Any advice on how to prevent this?
What did I need a hypen for, please explain. Always willing to learn. : )
I may have transposed the names but there is a difference between what a copyeditor marks as "1/m" (an em dash) and a hyphen. In para one, where you have "camouflage-and besides..." it seems you need an em dash. There's more than one, if I remember rightly. Whenyou mark off a phrse you need am em dash. which is usually in Word processing (space)- -(space). I'm sorry but I have aquired many pet peeves based on what college students do in assignments that frankly I would think they should know better than do (but of course they don't). OMG, you can't image! Using "thrown" for "throne" or "to" for "too." They seem not to know or care. Indeed, American English uses "toward" not "towards" which is about as proper as "colour," "labour" or "whilst" (I actually had a student try "whilst" on me). It might be pedantic but I think they gotta learn these things somewhere sometime. So when I see stuff like this online, I say something just in case other college students try to copy it.