This ``ID duck'' seems at least a little willing to listen and learn more.
She has extended an invitation for me to send her links via email.
I like her, she seems to possess some human characteristics. Shocking, I know!
I need Lyme 101 - as it truly exists - not as the obviously corrupt IDSA would have it.
I need your BEST ammo !
I need links to studies, articles - the more ``mainstream'' the better.
Links to studies that clearly discredit the erroneous theories of the established opinions.
Links about the fallacy of testing. Prevalence of Seronegativity in late-stage untreated or not.
Links to effects of late-stage untreated infection.
Atypical presentations/symptoms.
Please, Please, help me.
You have all been at this far longer than I and I am very weak today.
I am not a troll - (do you even get those here?)
I desperately need help.
(Yes, I have an appt. with a LLMD - but not for over a month -and I am worsening by the day.)
A million thanks for any help that you may give.
Sam
P.S. Should I post this in General Support ? Am I allowed to cross-post ?
Posted by adamm (Member # 11910) on :
lymecryme.org --studies documenting persistence,
testing insensitivity done by the very crooks who are now
denying Chronic LYme's existence
also lymeinfo.net
Also, why not try to interest her in attending some of the ILADS
seminars?
Posted by Keebler (Member # 12673) on :
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I would be VERY CAREFUL. She could be trying to identify and shoot them down.
anyway, even if she does come around a little, she would not have the adequate skill and knowledge to treat you.
It takes a very long time to learn all this. She needs MUCH training in order to be fair and even adequate for your needs. You need someone who has seen thousands of other patients.
This is not just about learning about one disease but a bunch of them - all very different from each other - the only thing in common was their having shared a tick. You MUST be assessed also for all the co-infections. ONLY someone very well trained can do this. TESTS ARE NOT ENOUGH.
I hope you can just walk away from her and find a seasoned, true, specialist.
You can't tell me that a doctor can't find information if she wants it. However, as you gather your chart notes to take to a doctor who is properly trained - if she seems honest and REALLY does want to learn more (which few doctors would ever admit to a patient), you can still offer the information.
You local support group may have names of local doctors that are already far more advanced in knowledge and can treat you NOW.
- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)
You can read more about it and see customer reviews.
===========================
"Cure Unknown" - also at Amazon.com
============================
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
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:
" . . .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.
Here are some reasons that educated doctors what to be sure patients get early and adequate care when possible -- and treatment, still, for chronic or recurring stealth infections:
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
[ 13. August 2008, 01:25 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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Oh, and of course the newly released documentary: UNDER OUR SKIN.
Sorry, I don't have the link.
You can cross search that with Open Eye Pictures (I think) and look in the NEWBIE thread at the top of the medical forum for that and other suggestions.
I would suggest, first, that she contact ILADS and then she learns from them.
Good luck.
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Posted by sameetra (Member # 16639) on :
Thank You ALL !
Great links.
Sorry for the delayed reply...
I have been very busy reading/learning as much as I can.
Of course, it is so much harder when I feel like this... this shell of pain and weakness.
(What I used to do in 10 minutes - now takes me 10 hours.)
Then, it started to seep in...
While it is important - no, critical that I educate myself as much as I can, struggling to educate, inform, convince a doctor of the facts, is simply impossible and most likely pointless.
Keebler is right - if this DR truly wanted to know the truth, truly wanted to learn more, then they easily could.
I suppose that there is still some part of me, however it may dwindle by the day - if not hour, that would like to hold faith in, at least, those brighter stars within my local medical community.
That is fading fast.
I'm sure you probably see this all the time here, this reaction, this process - whatever diseases we may have, we all share being human.