i thought i read somwhere that if your first WB tests were negitive or weak positive, after taking antibotics for a few weeks and being re tested the tests results would be more accurate and may be show more positive bands? is that right?
Posted by Pinelady (Member # 18524) on :
It is called a antibiotic challenge-trying to get the antibodies to show on the test by killing some
where the immune system will finally be able to see the bacteria in the system. It is the antibodies
that the antigens bind to on the test to show a band. In lyme sometimes it is so well hidden by our own cells where is mimics or hides in our own cytoplasmic membrane it is
required to get positive, but it is still a clinical diagnosis. I did a challenge of sorts to get what I got.
Stopping what I was taking for 11 days before testing. I think I should have waited 2 weeks to get a better showing, but not here to debate.
Ask Igenex.
[ 03-09-2010, 06:15 PM: Message edited by: Pinelady ]
Posted by 1hunter (Member # 24438) on :
my first test was Igenx positive but CDC negitive. My Lyme Dr. quickly said i had Lyme. I started taking antibotics per the LLMD. I've been taking the antibotics for 6 weeks and just had a checkup with my PCP, i showed him the Igenx results and he is very skeptical, he asked me to have another WB done at the Mayo lab and see an infec. disease Dr. for a second opinion so i dont get taken advantage of or mis treated by the LLMD. I just dont know what to think now. I hope the new WB shows Lyme and is now CDC positive. Forgot to mention the whole thing started because the PCP thinks i have MS. just confused...
Posted by Lymetoo (Member # 743) on :
The PCP needs to go jump in the lake.
Mayo is worthless for Lyme and he knows it. ( or he's just dumb )
Posted by DaveNJ (Member # 17362) on :
tested neg 10x in 2 years...positive after 2 months of abx....
Posted by DaveNJ (Member # 17362) on :
ps....i agree your PCP is full of [email protected] there done that!!
Dave
Posted by kmj (Member # 18400) on :
in same boat. PCP and neuro think all I am doing is lining the pockets of the LLMD. He says the only thing to do is have spinal done to find lyme. If its not there, Im barking up wrong tree. I have cardiac issues too and cardiologist says same thing - the LLMD is just "fleecing me for cash". It is so tough not knowing for sure. I so wish this thing was black and white. : (
Posted by WildCondor (Member # 434) on :
Listen to Lymetoo..and...for what it's worth. Re-testing to check the status of your Lyme is basically dumb. You will know you are cured when you have no more symptoms. Keep treating until you are cured and don't stop before. Your PCP is indeed, worthless.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by kmj: [QB] in same boat. PCP and neuro think all I am doing is lining the pockets of the LLMD. He says the only thing to do is have spinal done to find lyme. If its not there, Im barking up wrong tree. I have cardiac issues too and cardiologist says same thing - the LLMD is just "fleecing me for cash". It is so tough not knowing for sure. I so wish this thing was black and white.
For me... I would never do a spinal tap unless my life was in IMMEDIATE danger. Period. They are dangerous and ineffective for finding Lyme. Less than a 20% success rate in dxing lyme.
Useless, in other words!
Posted by map1131 (Member # 2022) on :
1hunter, please don't stay in that boat with that PCP. You will sink quickly and regret it later.
Believe us. We have seen your story thousands of times over the years. Swim, hunter, swim.
Pam
Posted by sickpuppy (Member # 23846) on :
Well if you listen to your ding-a-ling PCP you'll line the pockets of a bunch of doctors who will not help you.
Why does the PCP think you have MS?
Please stick with an LLMD.
Posted by 1hunter (Member # 24438) on :
You guys are very kind, thanks for the encouragement and information. Sickpup the MS thing started because last summer i had numbness in my right hand and right leg, my Pcp ordered a MRI that showed white matter.... he then sent me to a nero that did a ton of testing.(including a lumbar puncture) all the testing turned out good...except vitamin d was low. She said "i can't diagnose you with MS because only the MRI looks like MS and you only had 1 attack, but the MRI is highly suggestive of MS, and i will bet you will get a MS diagnosis soon" when i asked about Lyme, she said "we tested that twice, you do not have lyme." that is when i went to the LLMD. Dont get me wrong and please dont beat me up, i hope the LLMD's are all right and the rest of the medical world is wrong about lyme, but that seems unlikely? This is all very frustrating. i just want to know 100% what is wrong with me. To me and this is just me.. The regular MD's are way behind time and need to be more open, but the LLMD's are too far the other way, like everyone that is sick has lyme. sorry so long of post. Hope you guys dont beat me up, i'm just frustrated...sorry for the long post
Posted by LymeXtu (Member # 24590) on :
Hunter - Just wondering have you had alot of exposure to ticks and tick bites?
Posted by LymeXtu (Member # 24590) on :
Here is a link to a local women that lives by me MIS-diagnosed with MS. www.michelleonlyme.org
She actually testified at the senate and house hearings in Minnesota for a bill they were trying to pass to protect physicians that want to treat their Lyme patients longer than the 3-6 weeks that is recommended.
Posted by sickpuppy (Member # 23846) on :
1hunter, have you seen the documentary film Under Or Skin? If not, I recommend that you do. My LLMD said he's not at all into conspiracy theory but if he wasn't in the middle of the lyme wars (or whatever you wanna call them), he would not believe what's going on.
I feel like if you do some more research you'll see what's at play and what's at stake. This might help you build confidence in your diagnosis. You might also read Singleton's book, The Lyme Disease Solution. Not only does it explain the illness and give a broad overview of treatment options, it starts with an explanation of the highly politicized landscape of lyme.
Also I was misdiagnosed with both fibromyalgia by a few docs and Parkinson's by another. Lyme is a 'great imitator' and you would not be the first person to be told they have MS when in fact they have lyme. A good test is if you experience improvement on antibiotics. I think it's a worthwhile exploration since there's no cure for MS.
I'm also sorry to see that you write: don't beat me up. No one here should be doing that. There can be a sense of urgency sometimes--perhaps frustrating because of the internet format, you can't see the person or add an urgent tone to your voice. My feeling is that people here really want to help and since they've been through every kind of horror and doctor mistreatment, they want to save others the trouble.
Anyway , lyme is a complicated situation. Even though I'm confident in my diagnosis, nothing is set in stone and everything is complex. It's often hard to know how to proceed.
Please read read read. It's very important, with lyme as well as with other illnesses these days, to be a VERY active player in your health care. Questioning is good but make sure you are as informed as possible as your make your difficult decisions.
Posted by TerryK (Member # 8552) on :
Not unlike the history of many other diseases, there are battles going on regarding the diagnosis and treatment of Lyme Disease.
Most doctors who are NOT members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines to diagnose (or not) and treat Lyme Disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.
It's not like the whole medical community has researched lyme disease and has come to the conclusion that LLMD's are wrong. No one can be an expert in everything so medicine has developed a system whereby they rely on the "experts" to evaluate all the scientific evidence and come up with guidelines for doctors to follow. These guidelines are supposed to be voluntary but in practice, it turns out that they can be used against doctors who don't follow them.
In the case of Lyme Disease, the guidelines were drawn up by a small group of doctors who are members of the IDSA (Infectious Disease Society of America) and who do not treat chronic Lyme disease because they do not believe it exists.
The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and not only did they violate their own rules (IDSA procedural rules) in developing the guidelines but they excluded anyone who disagreed with this small group of doctors and they excluded any scientific evidence that did not agree with their narrow view of the disease.
In order to avoid a lawsuit, the IDSA agreed to convene a new panel (whose appointments were to be overseen by a medical ethicist) to review the guidelines in light of all the scientific evidence. We are still waiting for the outcome. The IDSA is in violation of their agreement with AG Blumenthal so who knows how long all of this will take. http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
Reading the book "Cure Unknown" may help put things in perspective. Written by a respected science journalist who has first hand experience with lyme and co-infections. Her book is well researched and revealing. Here is a brief look at parts of the book as presented in Psychology Today blogs - written by the author of Cure Unknown http://www.psychologytoday.com/blog/emerging-diseases
Terry I'm not a doctor
Posted by 1hunter (Member # 24438) on :
Thanks for all the links and info. i will check into the video and books, i have to learn..
LymeX funny you should ask... I have a cabin in the woods and am exposed to many ticks a year. I would say i pick off 40 per year, i only had i in the last several years dig in that i know of. It was 2 years ago and i got a red welt about the 3 times the size of a pimple, my Dr. gave me ABX right away. mabe that is when i got infected.
I do believe the likely hood is much greater that i have Lyme than MS, as i said just wish more Dr.s agreed.
I just read so many stories on here about people suffering for years and not getting better, just made me wonder if some people have somthing else. I feel really bad for them. I liked the story of Michelle (from above) she got diagnosed, treated and is better. I wish there were more sucesss stories on here. Mabe most of the ones that get cured just dont check back in?
I am thankful, my symptoms are very mild, i have just a little numbness in my right leg, and a little on my right side just below my ribs. Most of the nunbness is not to touch either its to hot or cold. It's worring about the brain lesions that bothers me the most.
Sick pup, no one beat me up on here, they are all really nice, i just know it is a sensitive issue to question LLMD's I guess there is enought of that out there!! But try going on some of the MS boards and telling them they might have Lyme and not MS... sometime a sore subject!
Posted by nefferdun (Member # 20157) on :
Cure Unknown is a great book to read to understand the controversy surrounding lyme treatment.
One of the tools for diagnosing lyme is a course of antibiotics. If the person has lyme they will usually herx within four weeks. That is one of the best ways to rule it out.