Lyme: Emerging Disease or Hidden Epidemic?

Thomas Gray, the English poet once said, "Ignorance is truly bliss." "Bliss" is a wonderful form of denial if you are in the throes of disease, such as Lyme. The illness can be a painful and debilitating process, fraught with complicated treatments and medical ignorance. One can accept ignorance with an emerging disease, yet not from the organization that is responsible for setting guidelines for treatment such as the Infectious Diseases Society of America:
http://www.idsociety.org/.

One gets angrier when you begin to question the root of that ignorance in the national governing body. Is the behavior based on lack of knowledge or more subversive? Is there an ulterior motive to hide the truth of this ailment? The IDSA guidelines are used by health practitioners to treat the disorder and by many health insurance companies to make coverage decisions. This is the point where ignorance turns into systematic deception, when two parties attempt to squelch doctors who in their treatment have discovered that these guidelines in many cases do not work. These doctors have come under fire, in some cases losing their licenses for assisting people debilitated by this disease. There has been widespread anger by "lymies" (this is what we call ourselves) about controversial treatment options and inadequate guidelines. Still, nothing is being done, and people continue to get sick.

Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..." "The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions."

Several doctors in key roles on the panel were found to have conflicts of interest. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."

It is not just the IDSA, the Center for Disease Control states the following: "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." For those of us who have Lyme disease, a few weeks of antibiotics would not begin to attack the source of bacteria let alone the co-infections and dormant phases of the illness. Unfortunately, without proper treatment, the disease takes a stronger hold on the infected; making it much more difficult to cure.

For those of you who are lucky enough to not have any interaction with the disease or people infected, let me explain what Lyme disease is. Lyme disease is a bacterial infection caused by the bacteria Borrelia burgdorferi (Bb) that is commonly contracted from a deer tick bite. Researchers are also discovering that other insects such as; mosquitoes, fleas and lice may also transmit the disease.

Early Lyme disease can produce a wide-range of symptoms and is different in each person. In addition to the initial diagnosis, Lyme can carry many co-infections which can make a person much sicker. The treatment options are varied and most aggressive treatment forms are not supported by traditional western medicine. For now, those of us who have the disease are left on our own to find a treatment that works. It is terribly frightening.

A few years back I had spinal surgery -- so I know what serious, debilitating pain is -- and I would gladly opt for additional spine surgeries if I could get rid of Lyme disease. It is that debilitating.

Other transmission confirmations that the general public may not be aware of: Lyme disease can be transmitted in uterus, through breast milk and blood transfusions. Some Lyme specialist believes that the disease can be sexually transmitted since the bacteria can be found in saliva and semen; this form of transmission is still in question.

Another troubling aspect of the disease is ability to diagnosis the illness. In many parts of the United States, (and Lyme disease is everywhere) the diagnosis and testing are faulty. In the documentary Under our Skin many of the issues behind this disease are discussed. At one point, in the documentary, a series of "Lymies" show up on the screen. Each person states the number of doctors it took to get a proper diagnosis. Some were searching for years. My search for a diagnosis took five months and twenty-one doctors. Twenty-one doctors in the heart of Silicon Valley and in Stanford Hospitals' backyard. Before I got the diagnosis, I was told that I was pre-menopausal, iron deficient, that I had Addison's disease, Cushing's disease, Adrenal Fatigue and post-trauma from my imprisonment in Zimbabwe.

Other myths that need to be challenged include the statistics on the prevalence of Lyme disease. I contacted the CDC and talked to the San Mateo County Health Department, for the most part they were less than helpful. I was told by the San Mateo County Health Department that I am the only case of Rocky Mountain spotted fever, (another co-infection) in the state of California in over 15 years. I don't believe them. Other thoughts to convey to your physician:

• The number of cases, the geographical scope and the proportion of afflicted that are severe cases needs to be reviewed. Lyme disease is not decreasing, it in increasing. You can get Lyme disease during the winter.

• Over 50% of those people infected by Lyme disease do not get the distinguishing rash or Bull's eye.

• Over 50% of those with Lyme disease get a false-negative on the testing.

We do know that Lyme disease can be debilitating. The disease needs to be researched to figure out all transmission modes for this illness. Since testing for this disease is inadequate, more research needs to be done to determine better testing mechanisms. In my own experience and in reading books such as Cure Unknown, so many stories of doctors and facilities that do not believe that the disease exists.

Insurance companies have typically refused paying for treatments. I personally know that insurance companies are refusing many of my costs. This weekend, my insurance company, Blue Shield of California would only pay for 6 pills to rid me of parasites caused by the immune system fallout from Lyme. In order for me to get the proper prescription of the full 30 pills and to rid the parasite, I had to pay over two-thousand dollars for the additional 24 pills. I purchased enough for the weekend and will start to call Blue Shield on Monday. I wish I was kidding.

Many people who have Lyme disease have sounded the alarm, yet the medical establishment is not listening. Why are there so many disbelievers in Western medicine? Why are insurance companies denying the very basic of claims? If the IDSA guidelines are in question, shouldn't the insurance companies be reviewing what is covered?

Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic.

There are many issues facing our country right now. For me, Lyme disease is at the top of that list. Too many people are becoming debilitated from this disease, some are dying. It is time that the medical establishment takes the politics out of Lyme and start practicing they oath they took to help the sick. You can make a difference. Get on-line, call your congress-person, call the White House at [phone]. Have a conversation with someone who has LYME disease. Help us to take action before Lyme's disease spreads further.

To each his sufferings: all are men,
Condemned alike to groan,
the tender for another's pain;
the unfeeling for his own.
Yet ah! Why should they know their fate?
Since sorrow never comes too late,
And happiness too swiftly flies.
Thought would destroy their paradise.
No more; where ignorance is bliss,
'Tis folly to be wise.

Comments

[kstuff]

Yes, there is Lyme Disease in Michigan. I was bitten while sleeping in my bed in Chesterfield, MI. Those cute dear in my backyard were carriers of the most difficult disease imaginable. Don't ignore any kind of bug bite that looks unusual, mine was eggplant purple with a round rash.

[criticalmass]

A few years ago, I got very sick, and had no idea why. My doctor at the time ran a bunch of blood tests. When I went back to see him, he told me I had Lyme Disease. I had an equivocal ELISA, followed by a Western Blot, which was positive for Lyme, IGM interpretation. He then sent me to a Infectious Disease Dr. The I.D. Dr told me I couldn't have Lyme, "Because in my 20 years in Colorado, I've never seen a case of it." He also told me, "You have a better chance of winning the lottery." I complained to the local health dept (El Paso County), they told me they would investigate. I went to the health department, and asked to talk to somebody about it. First, security showed up, then a Dr. I asked her why the health department was telling people there was no Lyme Disease in the state of Colorado. The Dr tried to change the subject, and told me that my case did not meet CDC reporting criteria. I then asked her What the positive test (W.B.) meant, she told me that was between me and my Dr. I told her, " My Dr said I don't have Lyme Disease, so is it alright if I go donate blood?" She told me that "The health department has no opinion on this issue." I am wondering does anybody have an opinion on this issue?

[lisakaz2]

If InGenex or another company says you got it, act on it. Don't listen to these ppl. Sounds like this is their convenience (pol or insurance). Find a lyme literate doc. Do your homework. Don't sit on your hands about it.

I've had lyme for almost 13 yrs, though the docs would deny it. Don't listen to those ignoramouses.

[Christina Kapala]

GOOD JOB- i am a group leader on MDJunction.com for the Lyme group and also an activist AND in treatment for this TERRIBLE illness. My hubby is a doc, and a good one, and I can tell you , that makes no difference in how I was treated and ignored for ten years/misd­iagnosed..­. You have attention with this article and I thank you. This is what another member and GREAT Lyme activist posted on our forum for you so I am pasting it in case anyone needs a Lyme doc/etc.. From Bettyg in Iowa

Hi Michealene,

You asked about getting a chronic LLMD, lyme literate md; join the FREE site, www.lymenet.org and click on flash discussion board
post in SEEKING DR. forum,

subject line: show the STATE/S names you want LLMD needed

tell a little about yourself; whether it's for adult / kids; as some llmds have AGE RESTRICTIONS.

Activism about simple steps on LYME BILLS HR 1179 and the senate version w/out a no. yet; go to ACTIVISM , read subject titles.

you'll find all the hot things going on: lyme bills, Dept. of Defense $10 million for MILITARY spending for those with lyme!; getting an oprah/dr. oz lyme show featuring under our skin; the drs. show having lyme, and greta van susteren lyme show to come! plus lots more!

hope to see you on www.lymenet.org and i'll be happy to assist you on closest llmds to you!

[lymedoc]

Thank you for the excellant summary - it characterizes so many of our experiences. I would only add my frustration here for further understanding. While I worked briefly for the military, I diagnosed a patient with Lyme disease by his clinical history and initiated treatment. The military (represented by the pharmacist) reported my action. The patient was taken out of my panel and the antibiotic cancelled. We, civilian physicians, were sent a memo stating the enormous expense of treating Lyme disease based on clinical symptoms, when the Elisa was negative was prohibitive. End of story. As a significant footnote, the military feels that Viagra is a justified medication for all males with ED.

[Michealene]

The Viagra situation is so common. We did not get insurance companies to begin paying for birth control until Viagra came out.!

I am so sorry that you experienced this. Must be incredibly frustrating as a doctor to not be able to treat your patience as you see fit. The insurance companies are obviously setting the tone on this disease. I think they should be held liable-that includes prosecution.

[asnevitt]

Was diagnosed in Aug 2007 after two years of going doctors. Now, I have acquired Dsyautonomia, thought to be evidence of auto-immune dysfunction. I'm told I need intravenous immunoglobulin. That costs $15,000 - $20,000 per month. I'll need it for at least 9 months.

Not likely to happen, as I can't get insurance to cover any Lyme treatment. Everything is out of pocket. We're bankrupt, my business is gone and my life is devastated. Was a strong, healthy go-getter for over 40 years. Had docs tell me I was crazy. Right. After 40 years of well-documented sanity I suddenly became some hypochondriac with a strange delayed PTSD problem. No. I have Lyme. Tested positive multiple times. Still, no treatment.

The story of Lyme is tragic. And it highlights all that is wrong with our medical system. How the profit-motive corrupts the system and how sick patients, in their least able time and in the time of their most need, have to find the inner resources to fight the behemoth in order to get care. And often then don't. We suffer. And we die. I'm concerned now, because I'm have irregular heart rhythms and sudden weakness with shortness of breath. My autonomic nervous system is now affected. This is dangerous. (As though the seizures weren't dangerous enough.) Still, I'm not left with any options. If I wasn't crazy before I needed medical care, the system is driving me there now.

[Michealene]

I am so sorry. I wish that I could figure out a way that ALL of us could make our situation known to congress. This must stop. I understand how you feel, and there seems to be nowhere to turn. Hang in there. Contact some of the lyme disease groups and see if you can find a good resource. Does anyone else have any ideas for asnevitt?

[Bsonder]

Have had Lyme Disease for months before diagnosed. Unbearable leg and join pain. Finally got sent to a different lab to test blood for Lyme. Results came back chronic. Doctor put me on strict 28 day liver detox using Metagenics Ultra Clear ph - you gradually increase your intake to three times a day and then gradually cut back. I stayed on it for 41 days as I began to really feel better.
Had to give up all gluten grains, dairy, caffeine and decaf, sugar and especially sugar substitutes (except Stevia) and hardest of all, alcohol. Rice milk and frozen organic fruit to mix Metagenic drink, ate only organic vegetables, lots of water, green tea, unsweetened cranberry juice mixed with acai berry drink, probiotics, high doses of alpha lipoic acid, Magnesium from Niche, Inc. (google) Acetyl-L-Carnitine, Reishi . gluocosamine, Vitamin C, Creatine and Milk Thistle. On 400 mg of Doxycycline. Taking maintenance dose of the Metagenics Ultra Clear ph (google) Added coffee & eggs and beancurd (a vegetarian) to my diet. Extremely tired during detox but worth it. Eating the few items I added, beginning to feel normal. Intend to stay off sugar and alcohol - they feed Lyme bug and make it grow. SO much better. I recommend the Lyme Disease Blog which advocates an anti-inflammatory diet which is almost the same, but without the drink I mentioned above. I think the medical drink did cleanse my liver where Lyme resides.
http://www.lyme-disease-research-database.com/

[Michealene]

It is still staggering to me, how many people have LYME and how difficult it is to get a traditional, respected doctor to listen to them and get them help.

Hang in there all of you, and it will get better. Thanks for the information on the aniti-inflammatory diet, I will check it out.

[Michael Venice]

Michaelene,

Thanks again for the post. I sent it to many people.

This illness is like waking up in a nightmare alternate reality where nothing is as it should be.

I'd been very healthy, and had some basic trust in doctors. I had so many doctors tell me that it was just stress--though I was sick--that I tried to push increasingly frightening symptoms out of my head. That doesn't work, by the way.

While we go from doctor to doctor, trying to live our lives as we can....our resources get drained and the illness progresses. I'm not sure about you, but even supportive people in my life had trouble believing the trouble I had getting a diagnosis, and the subsequent obstacles that present themselves AFTER you get diagnosed. I think people assume you've got a diagnosis, and there's a process there that is sane. It's not. For me, at the very lowest point in my life, I've had to fight the most. Not the illness (though that too), but insurance, doctors...­.all of it.

I hope you have a doctor you trust. I also hope you keep people updated on your progress. I don't think you have any obligation to anything but your own healing...­.but I also hope that you might be able to use the public voice you've earned to continue to write about this.

[Michealene]

Believe me, I think about this everyday. I have a responsibility with gifts I have been given, and if I can help at all to create further awareness-I will. IT is a big, dark hole out there. More to come...whe­n I have those times of feeling better.

[Michael Venice]

Getting better is the most important thing for you now. As far as writing--not just the politics and other issues, but I personally would like to hear that you're recovering over time.

My own experience is that it is slow, scary, and incredibly frustrating. It's more upside-down, because the treatment can create more/worse symptoms. It's a faith-based illness...­.the tests are not great, medications that are 'helping' often make you much sicker, etc.

By the way, any luck with BC/BS? I never have much (luck). I ended up getting Alinia from Canada.

I hope your days are better. Thanks for writing.

[Carolyn Degnan]

CALDA (California Lyme Disease Association) is holding a Lyme Patient Conference in San Ramon, CA on April 18th from 1:00 to 5:00pm. Four of the top Lyme Literate MD' on the West Coast will be presenting information on treatment protocol, research and getting healthy again,
You can register for the conference at the CALDA website www.lymedisease.org and click on events or you can call the San Ramon Chamber of Commerce and register over the phone [phone].
Patients are coming from as far away as New York and Conneticut. Family members are encouraged to attend as well.
Lyme disease is the fastest growing vector borne disease in the country far out passing West Nile yet it receives a fraction of the funding for research. It is often misdiagnosed as MS, ALS, Parkinson's disease, arthitis, fibroyalgia, chronic fatigue syndrome, ADHD in children---the list goes on and on. The diseaase robs people of their health, livelyhood and sometimes even destroys families.

[tallison]

It wouldn't fit, I wanted to mention #52. After 2 weeks of allotted 28 day IV treatment, I got leg rashes/str­etchmarks?­. 52, a well known Dermatologist, offered to laser them away for $400. I then told her of the Lyme, said "the marks came on suddenly", "they itch, disappear with heat", and "I haven't gained weight". As if the words had not been uttered, 52 says "When should we schedule your laser?". I walked out, went home and found my rash under 'Bartonella' on the LDA website. After a month of oral antibiotic, the marks disappeared. Calculated savings: $375, and hopefully the return of the rash.

As a licensed Psychotherapist I am disheartened with what I have learned through this illness. I cannot remember one instance in my training that referenced biological (specifically viral, bacterial) sequelae behind DSM diagnoses. This needs to change.

Cheers to all of us working toward that! Cheers to Under Our Skin film and Cure Unknown book (Pam Weintraub).

**Regarding 2-4 weeks of possible 'cure’: In Cure Unknown, Pam W. outlines a discovery that some bulls-eye rashes indicate a tick bite, but not necessarily that the germ penetrated under the skin, into a person's system. Thus, some folks who have the rash will be unaffected by Lyme. This is important to note because many studies have used the bulls-eye rash as indication of Lyme Disease, and have based their summaries of efficacy of treatments, and the virulence of Lyme on this.

[tallison]

Hi everyone,

Thank you for incredibly well written posts of your stories/struggles! In the throes of this, there is a tremendous sense of isolation due to shockingly violent denial that it exists! I tallied the number of MD's I saw before diagnosis: 46. Their testing showed nothing (3 yrs wasted). At doc 47, a Spinal Tap, SPECT, nerve & gut biopsy, etc., were finally run (all positive). Beforehand, I only had an abnormal titer, and incomplete WesternBlot. I tried treatment closer to home: Number 49 doc (IDSA panelist), said "This is not Lyme, I'm not sure why you're in pain. It will either go away, or you will have this the rest of your life". Thank goodness my 'jaw on the floor parents' were there for the nonsensical diatribe. (Around the corner) doc 51 needed a CDC+ to treat although he felt "probably Lyme can become chronic". On visit 2 he reported receiving another 'routine' state health dept call, questioning why he ran a Lyme test: what were the signs/symptoms? What was his plan now? He then asked me not to talk, and asked my folks "What do you think of her symptoms, and about Lyme, and that she's saying she can barely walk?" After hearing validation, baffled 51 shrugs: "I don't know what’s going on but I just can't get involved". Sadly I have 66 stories, some fascinatingly evil, some eerily odd, and finally some wonderfully validating.

Let's all continue to educate! Thanks!

[Jill Kornrumpf]

Thank you for posting this article here -- I wish more mainstream media would publish articles such as yours so more folks can learn about this silent epidemic.

Long-time sufferer who will never give up!!

[spitshine]

it's about time Lyme is being taken seriously.

[Laura Rothrock]

Thank you so much for your thoughful article from a fellow lyme sufferer! I share your anger and wonder if it will take one of the doctors or politicians who are in lyme denial to actually get this disease to understand how debilitating it is.

[LymeFroggie]

One thing that is really frightening is the fact you brought up about transmission routes. Lyme spirochetes are in our blood, in one form or another, forever. Those who are symptomless or misdiagnosed may donate blood.
In our area, (an endemic area) the donors are not asked about Lyme exposure. I know this as my husband donates regularly. As far as I know, they don't test the blood for Lyme. Carriers can unknowingly be spreading it.
How the doctors in the IDSA can continue to block research and treatment in their grab for the almighty dollar amazes me. The CDC thinks Lyme is under reported NOW? This is going to be the next AIDS type epidemic, if they don't get reliable testing and educational procedures in place ASAP.

[tvcee15]

I'm suffering too. What more can I say? This is a terrible epidemic that's being ignored, and someone, or several someones, should go to jail for purposely ignoring this horrible disease and turning an epidemic into a pandemic.