posted
I cant find one in my area. having a hard time locating one....I have had it twice along with a MILLION other problems.
Posts: 47 | From maryland | Registered: Jan 2009
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CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
==============
All this is not presented to frighten you, although I know it can be very hard going through this. I hope the links above will be able to help you locate an excellent doctor.
You might go over the the forum "Seeking a Doctor" and post there with the geographic part of your state posted in the headline.
Best of luck to you. this can get better with the right care.
posted
they have checked me more then once with standard test and it was neg.
my problem is that I have had it 2x and woke up with horrible pain with it on the same day
but they keep giving me drugs and telling me i have a headache...
not to mention there are tons of thing wrong since the first occasion. but we are playing the run around game
and who know maybe i am crazy..
but bells 2 times in 13 months in 34 yr old person with headaches and bla bla bla you get the picture or you wouldn't be reading this.
my primary doctor says i don't fit the criteria
So I have to ask what is the criteria?
Besides text book .. Please I want to hear what people really feel not what they say you should feel.
So I can decide it i fit..and tell the doc's to go to ____ and put the blood test _______
Posts: 47 | From maryland | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You say: " . . .maybe i am crazy.. "
I know it would be easier to believe that but I don't buy it. Has someone told you that? My bet is the doctors have alluded to it.
This is the time for patients to step out of that old trick doctors use to make them think they are crazy. And, that term is a disservice to those with psychiatric symptoms. No one is crazy. Many people, however, have neurological symptoms that can make one feel that way. Lyme can create many such neuro-psych. symptoms, too.
Do not believe that is the whole story. You must believe in yourself. You must listen to the cues and clues. Bells Palsy is one very real sign that something physical is seriously wrong.
It would be easier to melt back into the woodwork and think you are making all this up. That is what the doctors you are seeing would like to see.
You have to fight for yourself and step out of the established fraternity of doctors has it has been established.
Unfortunately, to demand to be treated correctly, we have to step across the aisle. It can be costly but not nearly as costly as if we do not seek out the real experts.
My advice is to strike all terms for "crazy" from your vocabulary. If you wonder that out loud, it will wind up in your medical file and you will never be taken seriously again. Even with friends and family, don't let them equate what you are going through as anything less than a complex condition for which there are explanations.
Sorry if I come off strongly about this part. Our respect for this new reality is important.
Still, it is quite understandable to have lots of emotion around all this. There are some excellent counselors who are also LL - and that's another area where it's vital to have that distinction if someone is to treat you.
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From Savely's article in post above:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests . . . ."
and " . . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic . . . . "
====================
You have to go to a doctor who knows about this. Most doctors do not. From what you say about your doctors, they do not.
I know, from experience, that many doctors will push even very ill patients out the door if they don't know what is wrong.
I know, from experience, that for a doctor who is a member of the IDSA to acknowledge the presence of chronic lyme - well, that is just never going to happen in time for you to get well.
You have to first have a clinical evaluation (physical exam; history) with a LLMD who is either an ILADS member or has been educated in the diagnostics and attended ILADS seminars, etc.
That doctor will know which labs to do your tests. Most labs do not do the correct tests and the CDC criteria is erroneous.
You need a doctor who has seen hundreds or thousands, of other patients with lyme in the various stages.
You can get a pool of posters here but it will not be a complete or accurate measure for what is going on in your body. A LLMD must see you - in person. You need that experience working for you.
posted
Thanks I will take that route I just want to be ready with all the info as possible.
People around here think you are crazy you cant have that unless you have the bite with the ring so why bother.
so hopefully you can understand why I ask why you feel.
Posts: 47 | From maryland | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Most people who contract lyme never see a rash. And - not all lyme rashes that might appear are the bulls eye shape.
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Some of us here could hunt for hours for articles from ILADS researchers about the connection between Bell's Palsy and lyme.
We've read it many times, but we may not have the correct links, etc.
I don't have the energy. Believe me, no one here is speaking out of turn in suggesting you see a LLMD. Such advice comes from an enormous pool of research and personal experience.
And we all wish you the very best. Yours can be a success story, with the right treatment and attention to detail.
For now, imagine how good it will feel when all this is correctly sorted out and you've made some progress.
posted
Hello I just want to let you know that I have Bell's Palsy also-but mine seems to be permanent. I am so ashamed over this.
I know exactly where you are at-I came to this website before diagnosis and right after open heart surgery.
As you can imagine I was desperate for a diagnosis.
My cardiologist laughed at me because I had self diagnosed myself with Lyme-but I begged him to do the tests anyway-then I would shut up about it.
They came back positive-but now that I have a diagnosis it still does not mean alot-I can't afford treatment with a proper doctor.
He is just keeping me on a daily dose of Doxy-just to keep me from almost dying like I have twice in the past.
I have had a terrible time with this disease-and needless to say my fiance took my dog for a walk through the woods on this island yesterday and he came back covered in ticks-
In the middle of January? I went ballistic-crying, desperate to get the little killers out of my house!
It's like putting a gun up to your head and playing Russian Roullette-I have came so close to death because of a tiny creature no bigger than a pencil eraser! It really is amazing!
Please persue your thought if you think you have Lyme-no one else will fight for you, except yourself.
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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posted
I have Bell's palsy and am self diagnosed with Lyme. I had the rash as well as bell's palsy. The docs were no help with either. I'm working to treat myself naturally because the docs were of no help. Stay strong and don'y let the ignorant get you down.
Posts: 51 | From Reno, NV | Registered: Dec 2008
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