I understand theat lyme is a clinical diagnosis and the tests are only used to support, but who will do a diagnosis other than a lyme specialist? I am confused as to who is going to be an advocate to really get this figured out. If the lyme specialist dr. is an advocate wouldn't he or she perform the procedures required by the establishment ... to ensure that the diagnosis is affirmative to the point of receive insurance coverage? I do not think the dr i went to did an elisa test which the cdc says is the first step in the process.

I am new to this controversies and I wonder why all the drs don't work together to create a supportive environment, or to discover the reall actual truth for people who in chronic states have been suffering for a long time I am 39 and had a tic bite when i was younger than 10.

I have so many symptoms of lyme and its progression to the central nervous system but if a doctor cannot diagnose with assurance, how can i really know? And are antibiotics effective treatment? And what happens is one does not use antibiotics at the point that it has reached the brain?

I am very confused about the whole thing and habve been to many drs over the years. Finally it seemed I discovered the cause of my symptoms only to find out that there is so much controversy and unknown about diagnosis and treating.

I am wondering now even though I have even some of the odd symptoms like poor ability to facial recognition, tremoring in lower lip, twitching, tingling, dental pain...along with the more typical symptoms of migraine, vertigo, joint inflammatin, bone pain, if I am not somehow caught up in my own hysteria because I finally found something that seems to really fit, but that is not accepted and is in controversy....and so I am at the end of my rope without a secure truth about what is going on. If it were not for physical symptoms, I would indeed thingk maybe i just need a psychiatrist.

Can anyone offer advice on how I can really find the truth about this situation and what to do? Is there anyone who will treat active and probable chronic lyme who is nto a lyme specialist?

Thank you in advance for any help.

First, my question is WHY did you go to a Lyme doctor, rather than a regular physician?

There has been controversy for years on lyme disease. I know, my daughter fell into the controversy, and subsequently went untreated till she by age 12 was suffering from seizures, congestive heart failure and severe pain. She underwent hundreds of tests at the top institutions in the State and West Coast. All gave her multiple diagnoses of syndromes, heredity conditions etc. She continued to get worse, despite treatment, until at age 14 she was given maybe a year left to live.

Her lyme tests were finally ordered, through a specialty laboratory, named IgeneX. However tests were also run by Labcorp and MDL. All were positive. She follow up tested through stoney brook, again positive. Her physciain here, a leading ID specialist , claimed she could not have lyme because its not in Oregon, and IgenenX always gives false positives. (funny thing...my tests were not positive, nor was my friends test).

When I challenged him, he said that they have a higher rate of positives than other labs....

duhhh...ok would a radiology clinic associated with a bone and joint specialist have a higher rate of patients who x ray for breaks? versus a regular radiology clinic whos associated with a regular doctor? Probably, because the bone specialist would eliminate some patients from needing radiology based on experience.

So, yes, IgeneX has a higher rate of positives, but because a large number of patients being tested have tested for years on all other things, and are negative...

My daughter, who could not possibly have lyme disease because its not here, who had a prognosis of 1 yr left to live, was in congestive heart failure....having mulitple daily seizures....

responded to her lyme treatment and is out of her wheelchair, off oxygen, off heart medications, off seizure medications and has lived 4 yrs longer than her prognosis....

Guess that test to me is more important than a dang political motivation to NOT TEST ALL SPECTRUMS OF LYME . IgeneX and one other are the only ones to test for the full spectrum of bands and consider strains found in the US rather than testing for anitbodies from Europe...as other labs are doing. (insurance companies would love to NOT TREAT....believe me. even with positive PCR testing they still refused treatment for my daughter, which I now pay out of pocket)

I dont mean to sound rude, but I think with your symptoms, and ruling out everythign else, that this is a highly possible diagnosis. Its sad that the Infectious Disease Society has given to cost constraint research rather than scientfic, evidence based research to improve the health of the patients, and when a threat comes along, they try to squelch it using the NEWSPAPERS...but wont even read peer reviewed articles against their beliefs.

I think it is just a fate one has to face or face up to. I am not having seizures but gosh darn it half the time I can't remember when I am and I just think I'm too young for Alzheimers.

I have been to many drs, that is why i went to a lyme dr.

I think I feel like I'm out of time and that's a problem because of desperation. But what i have learned most about what you have said is that I should consider more time and get all the tests done everywhere no matter what the out of pocket cost.

Then I hear so many people who at chronic stage don't get better but get worse. So I fear antibiotics anyway.

If you want some background on lyme and controversy, a good place to start is to read the books by Karen Forschner and Denise Lang. Details in the books listing on this website (click on books in green menu box left side of this page).

This is a situation where you really do have to educate yourself in order to be confident enough to pursue treatment, even thru the quagmires of tickborne diseases. Sorry, not a good time to have this because medical establishment doing a bum job generally.

I forgot to tell you...my daughter now enjoys Rock Climbing with the team, goes to college and works part time....

so her antibiotic therapy has helped CONSIDERABLY...

Yes I think my biggest hurdle is a matter of confidence anda lack of it. Over the last couple of years, reading has even become a challenge to me! What I miss most is my sense of humor.

I feel like such a victim and I feel that right now I could use a big push or something to find a way out of my head.

What I don't get is if it is chronic, or probable chronic how it can become so accute like a constant tingling in knees and twitching all over body, etc.

I think th e main thing is if I could just see I am not alone, I am not the only one. I feel trapped about it and am having problems in teh workplace which spurs a whole cycle of emotional response which makes me feel even more inferior as if it weren't alrady invalidating enough.

Thanks again. It is good to at least share with others who I know understand.

there is a sordid history of deception, fraud, and racketeering w/rt to the diagnosis and treatment of lyme disease, and other tick borne diseases.

search Kathleen M. Dickson on sci.med.diseases.lyme, one ILADS paper she co-authored, lymerix vaccine testimony before the FDA, and her RICO complaint.

if you do hot understand the science, get someone who you can trust to give you an honest opinion on the science.

ignore the relentless, gratuitiously sadistic assault on her, and focus on the science of the researchers whose patently contradictory work she has collated.

ALL labs have false positives and false negatives. There is NO test that is 100% accurate. None.

In the NYT article, you have to ask the question, "in whose opinion are these false positives?"

The opinion could be that of a competing lab or a scientist that own a patent on a competing test or even a Gov. employee who owns stock in a competing lab or even sits on the advising panel for the Arthritis Foundation.

You have no way of knowing these facts.

Most Dr.'s dont want to get involved with Lyme at all. Insurance companies have made it VERY clear that they will be romoved from insurance provider lists if they even diagnose Lyme. These Dr.'s could even get in trouble for Rx's antibiotics (a no no now in the medical establishment).

The medical community have always worked against new information. The Dr. who insisted on washing hands before surgery was run out of the medical profession for being a quack (the very idea of germs! how dare he).

Dont ever be fooled that the CDC looks out for you. They knew well in advance that blood was tainted with HIV in the 80's and they (along with the Red Cross) let it be given to people anyways.

That's a very clear picture of the NYT article and historically it is hindsight that show the face of truth indeed.

I just hear so much back and forth between it and being in it ... is hard to know what to do.

Does anyone tingk an infectious disease doctor would see me for a second opinion or are they all the enemy because they've been boutht by insurance companies? I really dont'e know and I don't know if there is a global answer.

Truth is, not knowing is something i have to get used to working with. I know my symptoms are pretty harrowing in some ways but i know many others are much worse off thatn I am.

Has anyone tried accupuncture?

My dr described it like going after bin laden can't do it with carpet bombing hjave to precision bomb.

From what all I've heard from so many with chronic, the antibiotics seem to just make it worse which is why i'm not sure what to do although if i don't do someting...i'll probably keep spiraling into places i don't want to be physcially and mentally.

Just my reponse to your statement that
"From what all I've heard from so many with chronic, the antibiotics seem to just make it worse which is why i'm not sure what to do "

I was diagnosed MS 1988...17years later found out it was lyme. First MS symptom was Bell's Palsy, hmmmm. Kept testing negative with the ELISA tests and WB from other labs, so dxd MS.

Finally found a llmd and was tested by Igenex. Sure enough positive for lyme.

If I'm not a "chronic Lymie" then I don't know what chronic would mean. Two years on abx lyme treatment and doing wonderful.

Not all get worse. Yes, you usually "herx" but provided your doctor is knowledgable and can read you body's responses, one does get better.

I now have my life back and looking forward.

Even had foot reconstructive surgery recentely which NO ONE would do while I "had MS".

Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ILADS.org/

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

http://www.anapsid.org/lyme/matthewgoss/index.html

jay, i am not sure if my test is a positive positive so i'm not sure that the insurance company will pay for the antibiotics but when i went to pick them up on friday i only paid a copay...maybe ti will come back to bite me, hope not

dmc, i want to say your story inspired me and i have chosen to take antibiotic therapy first for one month but not that alone. i am luck that my job didn't fire me yet but put me in a different capacity to give me a chance to keep me employed through this

i started antibiotics yesterday and i am using alternative healing too to help with everything.

i think i most apprehensive about the accuracy of the diagnosis even though i have all the symptoms in the order of how it is reported to progress now hitting the brain big time after a couple years of psyche torture...now with parkinsons lower lip trembling like stuff and really bad stop gaps in moement to moment trying to take care of business like...what am i doing? what was that thing i was just doing? aargh.

but most of all...it is a relief to not have to hide what i thought meant i was just crazy maybe schizophrenia or something else. now its out on the table i don't have to pretend anymore that nothing is wrong and that will be a great blessing in recovery because i am heaven bent on getting better and i can use all the help i can get. the stigma related to mental illness is what kills people, in my opinion.

thanks all for posting here. it's good to be on a path and in my mind right now...i hope to do this ting godspeed.

For me, I did as much research as I could, then I trusted my symptoms and my instinct.

So far, that's served me well.

Mostly, I wanted to let you know you're not alone.

This is an unbelievably knowledgable and helpful community...and I, for one, don't know what I would have done without the people here.

Andie

My Igenex WB was equivocal (meaning not even as positive as yours if you had a positive test result). However, I had ehrlichiosis, and a moderate to high Q-RiBb (this test is even more controversial but my doctor said that at the 1:32 level that mine came back, it was also supportive of my Lyme Diagnosis. After eight years of searching, I do honestly feel like Lyme is the problem now. I am about a month into treatment and learning quickly, that it goes very slowly, ups and downs, etc. So don't expect immediate results.

You can follow my story and progress at my site at http://www.BetterHealthGuy.com.

Unfortunately now they are back, and I am looking to this forum to help me once again.

Yes, I doubt if I have lyme, how can you not doubt it when every ID doc out there says NO, you DON'T have lyme.

But ultimately I know that I MUST have lyme, because all the other diagnosis (fibro, early MS, CFS, me being crazy) don't get better with antibiotics! So the proof is in the pudding.

What I'm upset about is going 10 years getting sicker and sicker with no ID doctor helping me, or even believing me!

So, please don't let anyone make you feel bad for doubting this diagnosis, you are human and you read the point-counterpoint all the time just as I do.

I know you will come to believe when your LLMD and antibiotic therapy give you your life back.

You have a positive IgM and an almost positive IgG, and classic 3rd stage Lyme symptoms (in my opinion)- just like me.
it certainly seems very likely that you have Lyme.

None of my family members are absolutely sure. But it seems the most prudent thing to do is treat for Lyme, while remaining open to other explanations for certain symptoms. As you say, we all live with some uncertainty- which is the most prudent way to hadnle this, again, in my opinion.

To clarify for you, the Elisa test is the first step in the CDC protocol for testing. If a person is positive, then you get to have a Western Blot. This is a big problem, because the Elisa test has a high false negative reate, so people w/Lyme are missed and then don't get to have the more accurate (but still imperfect) W. Blot.

You are fortunate to have had the Western Blot and, in many ways, to have a positive test on record. Many with Lyme don't have this.

With a positive IgM W. Blot, we have had no trouble with insurance coverage. This is good "cover" for the MD. May depend on your insurance company and where you are, but we've had no trouble.

Most doctors will only treat for 4 weeks. Lyme doctors treat until you are better, and then a little more. It can take a long time, actually.

Alternatives along with antibiotics are great if you can afford it. The probiotics alone are wiping us out!

I understand exactly what you are talking about. I've even had positive lab results from Quest and I have still wondered if what's wrong with me is Lyme.

I had numerous psychological problems due to this disease. I had tried so many drugs to help straighten me out I couldn't even count them all. A few times a actually attempted to kill myself and I felt like the biggest idiot, slacker at work.

Thank God I got a Lyme diagnosis. At first, I was SO relieved! Then I hit the spot you're at. What do you mean it's not cured with a month of antibiotics!? That first month was like an eternity. I mentioned to a friend that I had just taken my last pill for Lyme and she told me all about the "not cured in a month" ordeal.

To make a long story short, I found another doctor and continued Lyme treatment. I felt bad for over a year taking the antibiotics with little improvement. I then found out that I have 4 coinfections through Igenex.

After treatment for babesia (even though I only tested equivocal), I'm now 85% better and have long spells (months) of feeling 100%.

I haven't had any psych drugs in 3 years and no longer have any negative mental spells. I did take SamE while I was herxing to help with some mental problems then.

I'm still being treated with minocycline for Lyme and Ehrlichia. I'm also taking cholestyramine for detoxifying along with a bunch of supplements.

There are a lot of alternative therapies but they should complement antibiotic therapy in my opinion. Also, if you haven't figured it out already, what works for one person, may not work for another.

Take hope. Some of my worst symptoms were the first ones to go. Others came in their place but have also gone away. I'm now at a place where I have Lyme flares and recognize them for exactly what they are and know to give myself a break when they happen. I'm not constantly sick and tired the way I used to be.

Treatment can be rough but we learn what we can tolerate and what we can not. Getting better doesn't have to kill you.

Read as much as you can here. You'll learn through personal experience what to believe and what not to believe. I have.

Good Luck,

oh come on!!! PLEASE tell me it will be over in a month. i can be unrealistic. i hope i have the endurance for this, got a bit suicidal today...it has passed, thank god.

i am taking biaxin i see already it has a few side effects and my spine cna chin are more tingly even numb...a little worried about this, don't feel adequatley supervised by a dr. just got a test a diagnosis and waiting to see second dr for treatment consult in the meantime taking antibiotic.

i'm mad about this too. why are we all here to be challenged in this is what i want to know? i think there is a learning lesson in it for certain and it will take a lot of strength to find. i had a tic bit when i was 8...now i'm 39...it's been awhile, my poor little body mind! one neurologist suggested somatoform a year ago when i had some big time vertigo so that just added to my own insecurity of what i am experiencing with this. i don't like the word disease. don't want to put that on myself at all.

hopehelps, how long did you take biaxin before you got better? i have no idea what to expect except for the little bit of intensity today and it's only 4th day of antibiotic. i'm sorry your symptoms are back.

does anyone have numbness in spine and chin plus feeling like head is falling asleep and movement through body all the time? i am really worrieda bout numbness now... tingling in knees...maybe i should go to someone else while i'm waiting to see lyme specialist.

corgilla, what is SamE? maybe i need to look into that although right now i can't remember why!! maybe i will find my sense of humor now that would be the best thing to have happen to me i lost it quite awhile ago.

that's good i sure do hope some of the worse symptoms are the first to go.

thanks for listening all, its a blessing to be able to communicate with you who understand. i wish i knew what to expect like i've heard about a herxing thing and truthfully i really don't want to get literate in this stuff!

how long do these antibiotics take to work? dr that diagnosed with test said one year and i can't imagine that or what the stages of moving through that will be. i find all i want to do is sleep but i can't do that or i'll start a big fat rut that will be harder to get out of.

to lift up mind from cns depression draggin down my feet...spritely stepping...oh so sweet, i will dream on that. someone today said to me...a plan without a date is a dream. if i know what realistic goals are to achieve with thies, maybe i have a better chance at knowing expectations.

feels kind of like being in space and there's a tie to the lyme dr but i haven't really gotten any significant air from that visit yet so that i can trust all this.