13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Good post thanks for sharing.
Posts: 805 | From Utopia | Registered: Feb 2006
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bettyg
Unregistered
posted
copying above link here and breaking up for all of us neuro folks to comprehend/read .... bettyg
Michealene Cristini Risley Posted March 30, 2009 | 11:47 AM (EST)
Lyme - emerging disease or hidden epidemic?
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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." http://www.ilads.org/press_2_07.htm
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."
"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" http://www.underourskin.com 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": http://www.cureunknown.com/ 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 $2,000 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 (202) 456-1414.
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. ***************************
wow, thanks for posting this link of 1st hand knowledge from a lyme patient! xox
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bettyg Honored Contributor (10K+ posts) Member # 6147 posted 31-03-2009 01:40 AM
250 WORD LIMIT! *********************** i was double that so took forever to weed it down since word limit was NOT shown upfront!
Michealene,
Outstanding 1st hand experience you posted that touched all of our lyme/co-infection hearts!!
I've had chronic lyme disease for 39 years last Christmas; 34.5 years MISDIAGNOSED by 40-50 drs. since lyme mimicks 300 OTHER illnesses/ symptoms!
OUT OF POCKET EXPENSES for appts., treatments, labs, xrays, meds, supplements as well as gas, food, and lodging add up fast.
We want our health insurance companies to treat us FAIRLY; JUST LIKE CANCER, AIDS/HIV PATIENTS; just EQUALLY for them to pay their "fair share" instead of REJECTING US FOR "EXPERIEMENTAL TREATMENT"!!! HOG WASH!
It's HR 1179 in the house; senate no. not assigned as yet. HEALTH SUB-COMMITTEE CHAIR, NJ FRANK PALLONE, sat on it; would NOT allow it to be scheduled for discussion!
What a shame he was given almost $500,000 by the MEDICAL LOBBYISTS! Who is he going to listen to....those from IDSA, infectious disease society of america OR us, chronic lyme/co-infection patients who have NO money to give since it's been paid to our LLMDS since our health insurance won't pay!!
What's wrong with this picture when many of us pay $500 - $1200/month for health insurance that will NOT cover lyme/co-infection expenses?
This year we WILL be scheduled for our lyme bills to be discussed in senate/house; they will be APPROVED by each; and Pres. Obama will SIGN OFF on the 1st lyme/tick-borne bill ever presented for lyme disease research !! --------------------
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Abxnomore
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posted
bump...anyone else want to add their comments to this very good pro- lyme article???
posted
The more comments it gets, the more prominently this will be displayed on the Huffington Post. A great way to spread the message.
Posts: 991 | From California | Registered: Feb 2006
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bettyg
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looks like 35 replies posted plus mine i submitted just now...
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 once you set up your user name, etc.
post in SEEKING DR. forum,
subject line: show the STATE/S names you want LLMD needed
tell us a little about yourself; whether it's for adult or kids; age of kids as some llmds have AGE RESTRICTIONS.
i have the info to help you ok!
i can't remember if you are in oklahoma or elsewhere since i read so many stories.
you asked about activism about simple steps on LYME BILLS HR 1179 and the senate version w/out a no. yet; go to ACTIVISM and 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!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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