posted
You need to RUN from this doctor and quickly find a LLMD (Lyme Literate Medical Doctor). I would be happy to give you the name of mine...just send me a PM.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Kelly,
Fire your doctor. Or, at least, just don't hire him anymore.
Good luck finding an ILADS-educated LLMD.
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[ 03-16-2009, 08:04 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
Diagnosed after 4 years of madness on February 25, 2009 Posts: 8 | From auburn, alabama | Registered: Feb 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Don't you just want to photocopy your butt and send it to him and tell him to kiss it?
Doctors just irritate the daylights out of me anymore!
I vowed off cursing others years ago, but the way some of these IDiots treat their patients, I honestly sometimes wish every last one of them would come down with the very symptoms they say are in our heads and let them deal with it.
And then after receiving the "CDC approved" treatment with no improvement, just get in their faces and say, "SEEEEEEEEEEE?????"
Sorry for the vindictiveness. Just in a mood....
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Ah yes. I remember that. What was worse though was that I was (and still am) working in the office I was being treated in. Thank God the physician who was treating me got transferred. Still though, I work for two rheumatologists and 1 family doctor yet every 4 months, I have to travel 7 hours to my LLMD. I wonder if they feel guilty? I think the office manager does. Her husband died a little over a year ago of MS. Can you imagine my situation? It is insane.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Have you seen the Persistance Files at Lyme Info?
I think there are 13 pages of medical references documenting treatment failure after the standard recommended treatment.
Stick with your real LLMD and kiss this one goodbye.
I can give you name of a local PCP who is Lyme friendly.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Can you get to anyone who will give you antiboitics until you get to the LLMD?
Can you go and say you have a sinus infection? Do you have any acne? I mean I am pulling at straws here....
Can you go to the FFC in Atlanta GA? It looks like they are a little over an hour away from you. But, you have to pay out of pocket....
They had put me on Doxy and Amox for 3-4 months. I have changed from the Amox to Biaxin now. I have about 20 days of the Amox left and I don't know what to do with it. I feel retarded throwing it in the trash.
I really hope you can get someone to help you until your LLMD. Can you get to the LLMD any quicker????
Kind regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Oh, also my FFC doctor told me about Artemisinin which is supposedly an natural antiboitic....cost me like $80, but it is something.
There are several herbs that can help fight bacteria, if you just can't get any medicine.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Kelly,
Did you receive my e-mail?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Need Lots of Help:
Did your FFC doctor ALSO tell you that Artemisinin is never to be used alone as a single treatment?
That can bring about treatment failure for babesia. It must be combined with something else that also either attack the protozoa or enhances the artemisinin's effect just right.
Babesia treatment - as a combination treatment - is to last at least five months, according Dr. Burranscano (2008).
Up in a set of links I posted you will find a book by Zhang. He outlines this and his formula is a combination. Other LLMDs combine it with specific anti-babesia drugs.
Taking it alone will make babesia much, much harder to treat when you finally get to a LLMD.
And, while there are many herbs that have some antimicrobial properties, only very specific ones work with lyme and co-infections (and in very specific combinations and exact doses).
The books above outline some of those (Zhang; Buhner).
Diagnosed after 4 years of madness on February 25, 2009 Posts: 8 | From auburn, alabama | Registered: Feb 2009
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Be sure to take a series of photos of your rash to document the exposure.
Include a ruler to measure the size. Also include a face shot if possible to show it's you...not just someone off the Internet. You may want to write the date in pen on your skin.
The ADPHD used my photos to determine I was CDC positive and was supposed to be included in the Lyme case count.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dr. Blow hole, I love it. I wonder if he checks out other patients that he treats for someother type illnesses?
Does he refer to another doctor? Maybe someone more intellegent than himself?
Dr Blow hole, usually we call people like you ducks. But in his case, I love Dr. Blow Hole name.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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quote:Originally posted by DaveNJ: Dr Blow Hole ...giving Blow Holes a bad name since 2009
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Need Lots of Help:
You wrote: " . . .I think I might try to go to one walk in clinic, say, I just got bit, I need doxy. When it is out go to another one. . . ."
In these days of computer that would be easily tracked not only by a new doctor as they are admitting you but also by the pharmacies' interactive systems - especially if you get insurance coverage for the med.
And - even saying that you just got bitten will not automatically get you medicine.
I know this is very hard but I sure hope you find a good ILADS-member LLMD. It's best to put all your energy into finding what will work for you now. Drop the dumbo doctors and just walk away (after you have a copy of your file for your own personal file. You don't have to tell them why you want a copy).
It is best that you not tell them where you are going.
At first, my mom and husband told me....That is just the way you are, you are not sick, you are just lazy by nature....
I did fire back with...Do not think I am giving this up, this is my life and I KNOW something is wrong...
I refused to let either one of them go on the first trip with me, because I said this is all about ME and ME getting better and I don't want any of your negetivity.
Since I found out that I have lyme, as does my husband and daughter, my mom and husband have come around and they believe me now.
They don't understand why lyme is so difficult, but they dont' think I am making it up anymore.
You are on the right path by going to a llmd!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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quote:Originally posted by Need Lots of Help: Oh, also my FFC doctor told me about Artemisinin which is supposedly an natural antiboitic....cost me like $80, but it is something.
YOu can get artemisinin for about $20 at Vitacost. Allergy REsearch Group.
It's for babesia, not lyme....(just for clarification.)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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