please copy this and paste as NEW POST IN SEEKING DR. FORUM. go to right side, click forum home, and select seeking dr.
subject: show the largest cities in your county plus NY LLMD NEEDED
at top before your pasted info, show largest 4-6 cities CLOSEST to you; we'll help you from there.
go to bottom left side and mark box to receive all replies; click send!
none in liverpool! need more info to help you ok!
paste it there.
Posted by groovy2 (Member # 6304) on :
Hi Switzer-
Trout is right -- Dont waste time with a doctor that dose not know what they doing --
You dont want to be the experiment -
Because the test are done in a certain way having a false positive is Very Rare -
False negatives happens all the time tho -
Some people dont get the bulls eye --
If you have the symptoms its likely that you have it--
Look on the page Find a doctor here on Lymenet- you will find help there--Jay--
Posted by Keebler (Member # 12673) on :
-
You might consider not returning to that doctor. She is not at all educated in the area of lyme and other tick-borne disease (TBD). And the ID (Infectious Disease doctor) is simply ignorant for having said that. As a rule, most ID doctors are ignorant about lyme. This is not just an opinion, but an observation.
You cannot afford to keep paying doctors who have no training and no education in this area.
You need further evaluation by a ILADS educated Lyme Literate medical doctor (LLMD). You need someone who has seen hundreds - or thousands - of TBD patients.
You should not be anyone's first patient - especially someone following advice from an idiot.
First, you can't test later to see how things are. Lyme does not work that way.
Second, lyme treatment is NEVER with just one antibiotic (abx) and the treatment you are offered is far too short and not enough of the right combinations. Lyme has various stages and forms. Each of those much be addressed with a different Rx.
Third, the IgM is often most telling for chronic lyme, not the IgG.
Fourth, they have failed to test for coinfections - other TBD.
Fifth, did they tell you to take probiotics? Liver supportive measures?
---
I know this must be hard to read - but you have a good chance if you find the right doctor. You are very wise to ask about this.
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.
- FULL ARTICLE AT LINK ABOVE.
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.
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
More likely a false negative result than a false positive.
Please find yourself a Lyme Literate Medical Doctor asap.
Please don't be someone else's guinea pig.
When a duck diagnosed me she excitedly exclaimed I was her 3rd patient.
Uh...no.
Found this site and was directed to a LLMD by Lymetoo (Thank you ).
Can't imagine where I would be without this help and my LLMD.
Hugs,
Geneal
Posted by lymie tony z (Member # 5130) on :
Tell your duck to read the entire lab result where it remarks about negative and positive test results right on the paper.
Then inform her that two of three bands in the IGM means you have an ACTIVE INFECTION and you should be on IV medication...or at the least a higher dose doxy and amoxi or zithro and a flouroquinalone(even tho they can cause tendonitis) plus a cyst busting AZOLE like metronidazole, tindazole or flagyl...
dumn IDIOT(that's what we call ID doctors) and ducks are what we call lyme illiterate medical drs., cuz they quack all the way home to their houses in the subburbs....LOL!
zman
Posted by lou (Member # 81) on :
Getting an antibiotic now can mean that your antibody response is blunted, so that next test could be negative instead, and not because you don't have lyme, but because these tests are looking for antibodies.
The reason the ID(iot) doc said a positive IgG result was required is because the CDC reporting criteria give that as one option. These surveillance criteria are often misused by doctors who know nothing about lyme or don't want to treat lyme cases. They are not meant to be used in a clinical setting (your doctor's office) as the sole determinant of whether someone has lyme. The CDC even says that.
So, you are getting bad advice all around. The only bright spot is having an Rx for doxy. But that is not long enough. So, get busy finding a lyme specialist. People who catch it at an early stage and get adequate treatment usually are cured. If not, you are in big trouble. So, window of opportunity here. You need to leave your current doc, unless she is open to extending the Rx, and it doesn't sound like it.
Posted by sixgoofykids (Member # 11141) on :
Your doctor is using the IDSA guidelines and the CDC tracking criteria.
The tracking criteria is not for diagnostic purposed according to the CDC.
The IDSA has to review their guidelines because the board that wrote them was being investigated for anti-trust violations and agreed to a review with a possible rewrite.
Your doctor obviously does not know much about Lyme and is just going by what the ID doc says.
I would find a Lyme literate doctor for treatment. You know you were bitten by a tick, tested positive, and now are sick. It's not rocket science. More proven chronic Lymies are IgM positive than IgG, so you may wait a lifetime for that result.
Posted by adamm (Member # 11910) on :
read up on this at lymecryme.com and lymeinfo.net, make an
appt with an ILADS LLMD immediately, and, while you're waiting
to go to it, do whatever it takes to get enough doxy to be
able to dose with 400mg/day for 3 months (you were probably told to take 200mg/day for 1 month--such a treatment
utilizes only half as much of the antibiotic as is bacteriocidal and
may not last long enough to cover even one spirochetal
reproduction cycle.)
Your doctor, like so many, was duped by
the authorities, and now you are
in grave danger as a result. If you want any chance of achieving
a lifelong remission of the disease, you must act now.
[ 18. September 2008, 03:55 PM: Message edited by: adamm ]
Posted by Lymetoo (Member # 743) on :
Boy, that must be SOME doctor! Her first Lyme patient in a state HIGHLY endemic for Lyme disease!!??
I agree with everyone here. You need a specialist, and since you were bitten in April, and it's now September, you need one fast. The infection is spreading. And no that's not a false positive. When a massive protein like K41 flagella shows up, followed by a very specific IgM 23K, you know it's serious and needs to be evaluated by a Lyme and associated disease, specialist, or an LLMD.
Posted by hiker53 (Member # 6046) on :
IgM usually means a current active infection, so if you jump on it right away you could get well faster!
Posted by soonermom (Member # 14494) on :
PLEASE don't waste any more precious time trying to educate doctors that are telling you it is a false positive.
It is CDC positive, what more do these people want??
It just amazes me how a patient can just hand them the diagnosis, but they refuse to accept it or even treat them appropriately.
And, this is in New York??!! Sometimes I think it is a miracle that ANY of us finally got diagnosed and treated.
I know that it might be hard to believe a bunch of people on the internet over your doctor....but we have all been down this road before.
It's just disturbing how doctors are putting so much effort into proving to us that it ISN'T lyme and not so much into treating us for an infectious disease. It must be the only infectious disease that no one wants to treat????
Posted by hshbmom (Member # 9478) on :
Here's a physician's journal article about the diagnosis of Lyme disease.
Why do we always hear about a high rate of false positives? This article clearly states the false positive rate is only 2-5 percent. That's a very low rate.
July 15, 2005 American Family Physician Diagnosis of Lyme Disease
False-Positive and False-Negative Test Results
Among healthy persons living in a region of low endemicity, the false-positive rate with serology is about 2 to 5 percent.9,17,18
The most common reason for a positive serology test in the absence of Lyme disease is the presence of another spirochetal infection such as syphilis, spirochete periodontal infection, or relapsing fever.17
Patients with rheumatoid diseases or infectious mononucleosis also may have false-positive reactions, especially IgM.7,9,17,18
False-negative results often are attributable to tests taken too early in the course of infection. Because the antibody response develops slowly, tests taken within the first two weeks of infection have low sensitivities (less than 50 percent).
Read the whole article.
Note the statement ...In highly endemic regions a solid rash is seen most often. If it occurs, the bulls-eye rash occurs quite late in the rash stage.
Posted by Lymetoo (Member # 743) on :
Switzer... are you still there??
Posted by switzer (Member # 17214) on :
Sorry I have not responded. I was having
problems logging into the site. I really
appreciate everyone's input. It means alot.
Can you get shots for the pain. My bones and
joints some days hurt so bad. I cant stand it.
I am sick of relying on pain killers.
Posted by disturbedme (Member # 12346) on :
Switzer - have you made an app. with a LLMD? It's so important right now, far more important than getting pain killers.
Posted by switzer (Member # 17214) on :
No, I havent yet. I am looking into it but
a part of me thinks that if I just turn my back
it will go away. Also, I am alone and worried
about money. I have been to doctors in the past
when i had problems and the drs were mean and
told me nothing was wrong. It was in my head.
What if I travel and pay to go to a dr and
they just tell me there is nothing wrong with
me? I dont know what to do.
Posted by disturbedme (Member # 12346) on :
Switzer - LLMDs are not like those other doctors. Plus, you have a positive test. This time you KNOW you are right. You KNOW something is wrong with you.
Please don't ignore this and turn your back. You'll end up much sicker, maybe even in a wheelchair if you ignore this disease. You have to fight back or it will take over.
It's also not good that it's already been four or five months since you pulled the tick off you. You don't want this to become chronic. Are you on antibiotics from that first (idiot) doc you went to?
Posted by lymie tony z (Member # 5130) on :
Look Switzer,
If most of us had the chance you seemingly have and knew what we all know now...BELIEVE ME!
We WOULD GO AS FAR AS IT TOOK AND USE PLASTIC TILL THE STUFF MELTED TO GET WHAT WE NEEDED SO AS NOT TO HAVE TO GO THRU THE CRAP THIS DISEASE CAN GIVE A PERSON.
IT's NOT GOING TO GO AWAY ON IT's OWN...especially since you just kicked it in the side with that weak dose of doxy...
You have some of these pains because you're probably killing some of the chetes and causeing a jarosch-herxeimer phenom...when we kill the boogers they release neurotoxins or toxin(du jour) which make the patients sick as hell....
The antibiotics if strong enough should calm down your pains without pain killers....
You better NOT BE DOING STEROIDS that ducks like to give us for pain killers...ya know like anti-inflammatories, cox I or II inhibitors or anything else like that to bring down the swelling to relieve your pain...
They are IMMUNOSUPRESSORS and will allow the bug(s) that's infecting you disseminate all the more rapidly and quite possible get to your spinal collumn and right thru your blood brain barrier and into the bio-chemically electric impulses your brain uses to communicate with your body and motorskills not to mention your cognitive abilities...(ability to think clearly)which you may already be suffering from!
GO MAN GO!
zman
Posted by Lymetoo (Member # 743) on :
Right... LLMD's are not like the other doctors. They will help you!!! and YES, you have a positive test!
There is NO doubt... just find the right dr!
The best pain relief is antibiotics. The sooner you get on them the more likely your complete recovery and relief of pain.
Get after it!!
Posted by switzer (Member # 17214) on :
4 weeks ago i started 100 mg doxy 2x a day.
Only for 2 weeks. i was feeling better only
for the last 3 days of taking it. I also got
this horrible itching rash all over my body
which went away. However, pain remained and is
now worse. I feel like my bones hurt to my
ankles and muscles feel like they are bruised.
I have back and joint pain from an old car
accident injury. That pain has intensified. I
keep getting sore throats and ear pain. My legs
shake. I have a list of drs someone sent me and
i will go through them.
Posted by mazou (Member # 15319) on :
Have you had any luck, switzer?
Posted by seekhelp (Member # 15067) on :
MORON doctor..why do these idiots get a paycheck?
Posted by adamm (Member # 11910) on :
That doctor is either a psychopath, an idiot, or both.
The dose of doxy you're on will ensure that you develop an incurable brain infection--400 mg/day is necessary to kill the spirochete, and you need it for 3 months at your stage of the game. Do whatever it takes to get this, educate yourself, and find a doc near you who follows the guidelines of the ILADS (rather than the IDSA.), as the clock's ticking.
Sorry to break it to you, but for the last 30 years, corrupt public health authorities have been dissemination disinformation about Lyme and other tick-borne infections, and most MD's have just been eating it up. Search the forum and use the links below to learn the truth about what you're up against.
lyme-info.net lymecryme.com
Posted by switzer (Member # 17214) on :
To all who recently responded. my health became much much much worse. i no shake so much when i stand up that i cannot hide the disease anymore. People ask if i am cold and i say yes than they say something else is wrong, people who are cold dont shake as much as you. But pain comes and goes, jaw pain comes and goes. my thumb twitching stopped recently and I am really getting my strength back. doesnt last all day but at least its strength. I could never have imagined how bad this disease could be. I am very tired and just took ambian so I found dr here and will let you know what is going on tomorrow..
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You don't want this to become chronic. Are you on antibiotics from that first (idiot) doc you went to?