The bands that I have positive for Lyme are specific for Lyme IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] Positive IGG P93 AB [Present] IGG P41 AB [Present] IGM P41 AB [Present] IGM P23 AB [Present] Lyme IGM WB interp. [A] Positive.
My infectious disease doctor thinks its a false positive. Help? My symptoms are getting worse and I am not sure what to do. Did anyone else have these Lyme bands? What should I be thinking or doing? I called the Lyme disease specialist in Bozemen,MT ( I live in Idaho) and she says I have lyme according from my lyme test that i read to her over the phone.
I am torn between so many doctors.I am torn about this whole disease and getting a spinal tap. Help. I feel like I am falling apart.
Posted by trigal2 (Member # 20578) on :
Why does he think it is a false positive?????!!!!????
I would take your results to a LLMD..
Why would you need to go through the pain of a spinal tap when you have a positive result?
I would not do it. I would go to a LLMD and get treatment based on your history, symptoms and current positive test results. TG
Posted by djf2005 (Member # 11449) on :
no on the spinal tap.
see a llmd
Posted by Lymetoo (Member # 743) on :
NOOOOOOOO!!! Not unless your very life is in danger. Dump the doc!
A spinal tap has a 20% success rate in finding Lyme. The insurance company could use a negative finding against you and deny treatment later.
You have a the DNA of the Bb right there. Is the dr blind?
note... I had a mistake in the link.. it's right now.. you may need to refresh your screen to see the right one.
Posted by Lymetoo (Member # 743) on :
If I'm reading it correctly, you had a positive WB AND a positive ELISA??
ELISA's are known for their false NEGATIVES.
Posted by Dekrator48 (Member # 18239) on :
Please find a LLMD asap!!!
You have positive results which are hard to get, so believe them and get a LLMD now.
An ID Dr will not be able to properly treat you even if he decides you really do have Lyme.
An ID Dr will give you only a few weeks of meds in doses too low to really kill the infection.
But he WILL tell you that you are cured with a few weeks of meds even though all symptoms persist!!
You also need evaluated for coinfections like babesia, bartonella and ehrlichia which only a good LLMD can do.
Please listen to people who have been through all the bologna!
When your ID Dr is wrong it won't be him that suffers for the rest of his life...it will be you!
Bite the bullet now and call a LLMD!!!!!!!!!!!!!
Posted by Pinelady (Member # 18524) on :
No to spinal tap. Do your research.
Borrelia are rarely found on spinal tap.
So he would say neg. and go home to continue to be sick.
Find a LLMD to help you get well.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Dekrator48:
When your ID Dr is wrong it won't be him that suffers for the rest of his life...it will be you!
well said
Posted by psr1 (Member # 22957) on :
I had a neurologist talk me into a spinal tap: no Lyme found. But I had a positive Igenex test, and all the symptoms of Lyme. The spinal tap serves no purpose, and has significant risks.
Posted by njlymemom (Member # 15088) on :
spinal taps have an accuracy rate of 20-30% that is what i have read
there is a purpose to the spinal....ins. companies use the false negative to deny tx.
Posted by Keebler (Member # 12673) on :
- NO ! NO ! NO ! FIRE THAT DOCTOR.
You do not need a spinal tap. Cancel and don't go back. You need a better educated doctor, for sure.
This explains why a LP (also called spinal tap) is such a poor test. Plus, they can be very painful and you could have a tremendous migraine FOR WEEKS afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . . -
Posted by DaveNJ (Member # 17362) on :
Please don't!!!! Been there done that. Waste of time and money never mind the suffering.
Dave
Posted by Keebler (Member # 12673) on :
- This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
Note he says "Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme."........
Dr B is the author of the OFFICIAL GUIDELINES of Lyme treatment by Lyme literate MD's.....please believe him!!!!!
Posted by karenl (Member # 17753) on :
Stephanie,
I also would strogly advise you not to do a spinal tap - unless it is a very life threatening problem.But not for lyme.
I had one done at Hopkins and many people had serious problems afterwards. I had to sign that death is a side effect, they showed me that paper one minute before the procedure.If they need that paper why do they tell you it is harmless.
I personally had no pain at all without any medications but you are not feeling well for some days.
The right thing to do: Harmless bloodwork can show lyme and co-infections. You need the best lyme labs and for co-infections I like frylabs.com. Their biofilm test shows you also other things in your blood which was very (!!) helpful for me.
Hope you are able to study.
Karen
Posted by kimp (Member # 19339) on :
Just wanted to say I was thinking about you.
I know it is a big step, but you may need to consider withdrawing from school for the semester.
We were in the same position 1 year ago and daughter did have to withdraw. It gave her the time to concentrate on treatment and was able to return in the fall.
Good luck!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by njlymemom:
there is a purpose to the spinal....ins. companies use the false negative to deny tx.
Exactly
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: NOOOOOOOO!!! Not unless your very life is in danger. Dump the doc!
A spinal tap has a 20% success rate in finding Lyme. The insurance company could use a negative finding against you and deny treatment later.
You have a the DNA of the Bb right there. Is the dr blind?
The decision to do a spinal tap on a patient with Lyme Disease is based on the physical findings. Obviously, if a patient has papilledema, they will be tapped after a CAT Scan or MRI shows no mass lesion. But in other cases, the decision to do the tap is based primarily on the need for additional diagnostic information or where there is a question as to whether the diagnosis is something other than Lyme. We have tapped about twenty-five [sic] patients so far. The majority have had normal spinal fluid findings. Usually, they have no elevation of their white cells. Protein and sugars are normal. Cultures are negative. Interestingly, however, at least fifty percent of them show increased pressure with opening pressures greater than 200, sometimes as high as 400. Every patient with papilledema has had a pressure of at least 300 or more except for one girl whose opening pressure was 260 but she had obvious papilledema and also loss of vision in her left eye. Eight of the patients had a pleocytosis with cells ranging from 60 to 700, predominantly lymphocytes. Only two patients showed a positive CSF titer Interestingly, however, at least fifty percent of them show increased pressure with opening pressures greater than 200, sometimes as high as 400. Every patient with papilledema has had a pressure of at least 300 or more except for one girl whose opening pressure was 260 but she had obvious papilledema and also loss of vision in her left eye. Eight of the patients had a pleocytosis with cells ranging from 60 to 700, predominantly lymphocytes. Only two patients showed a positive CSF titer.
[ 02-23-2010, 10:46 PM: Message edited by: Pinelady ]
Posted by MDW005 (Member # 22706) on :
I agree NO, I had one done it took 2 weeks instead of a couple days to heal. Never found a thing
Posted by Florence1 (Member # 22960) on :
Hi. I too was talked into a spinal tap...after positive western blot....it served no purpose....it was negative....all it gave was the DR's an excuse to put a ? in front of the word Lyme........you probably feel pressured as they are your Dr right now......change Dr's...it doesnt serve any purpose...you have your diagnosis....and get an LLMD.......
Posted by dali (Member # 24458) on :
I had this happen to me. Doctors wanted to "confirm" diagnosis with a spinal tap. I pretty much RAN out of the office. Your test appears positive and you need appropriate treatment.
Good luck!
Posted by Lymetoo (Member # 743) on :
The Lyme Debate... You need to understand why ID drs will not treat Lyme long term:
Look at all the replies to try to help you and how many yes do you see???
So PLEASE listen to everyone who truly knows what you're going through..everyone has given you wonderful advice...PLEASE do not ignore it.
The bottom line: it is YOUR body and YOUR life Not the ID doctor.
Good luck, God Bless and let us know how you do.
Karen (:
P.S. He thinks it's a false positive?????? Gheese where do these guys get their medical degrees ????
Posted by Keebler (Member # 12673) on :
- Stephanie,
You might check with your college registrar as to the cut-off date for filing for incomplete in courses. Or if you could take some time off somehow.
Every semester in college I had to take at least one incomplete and I also had to take a month off once for "mono" (dx w/o a blood test) that was likely lyme with bartonella.
Also, I've been a college teacher and I had to give that up (never got treatment at all). So, it is with a heavy heart but also a practical mind when I suggest you give this some thought. It's very hard to achieve what you need to if you are feeling ill.
At least just find out your options. If you do take an incomplete, it may just "freeze" your tuition but I'm not sure if there are fees involved.
If you are struggling in any class, you might think of dropping it - or go to your instructors and talk with them. Explain what you are dealing with and they may be able to help in some ways. Most would go out of their way to help, really. But you have to ask.
You might also ask at your student affairs office about any volunteers who could help you in tutoring, laundry, etc.
If you need any adjustments to your lecture halls about lights or sound, let someone know.
If you need a ride to class, you might see if student services can help with little golf cart - or if you find yourself across campus and can't get back on your own, call security and they will pick you up.
Good luck and be sure to take excellent care of yourself. Eat well and rest when you can. A gentle yoga class may be nice. -
Posted by seekhelp (Member # 15067) on :
Keebler, I swear you could make a career out of your good advice. Something like a life coach as how to effectively deal with chronic illness and self-care techiques. You could probably charge for your wisdom and make some good money. I'm not kidding.
Posted by Keebler (Member # 12673) on :
- Seek, just thinking of all the things that caused me trouble. All this comes from the closet where I sit with my computer - it's easy to think of ways things can work better in the world when I'm not actually in it !
-=========
Hey, Stephanie,
I just stopped back to see if you cancelled that spinal tap that was/is scheduled for this Friday?
Please let us know when you cancel that, okay? -
Posted by NeuroEcclectic (Member # 17783) on :
yes to Keebler for coach, no to TAPS!
Posted by seekhelp (Member # 15067) on :
Well, that may be true, but everyone has a purpose in life. Many people when very ill just have no idea how to handle issues. Sure a LLMD or ND may help with nutrition or medicine or herbs. Do they care about or know how to function when ill? Maybe not. Counselors may help on the other aspect.
You've got both sides of the equation. You know tons about nutrition, herbals, and how to function / manage in bad situations.
quote:Originally posted by Keebler: - Seek, just thinking of all the things that caused me trouble. All this comes from the closet where I sit with my computer - it's easy to think of ways things can work better in the world when I'm not actually in it !
Posted by mcg08002 (Member # 24617) on :
I am calling my ID doc and asking her about the spinal tap. I do not know what to say to her...
Posted by Pinelady (Member # 18524) on :
I would tell her the 93 band is genetic material of
borrelia and you will take that as enough evidence
for treatment of Lyme.
Posted by Robin123 (Member # 9197) on :
Hi - you appear to have a positive ELISA screening test (the EIA test) and Lyme-positive bands in your IgM and IgG Western blot antibody tests.
You're done testing, Stephanie - you need to see an LLMD - a Lyme-treating medical doctor. You can get a referral here if you need one, in Seeking a Doctor - post for Need LLMD in Idaho/nearby.
You do not need to talk with the ID doc anymore. ID docs do not diagnose and treat Lyme, generally.
Posted by Keebler (Member # 12673) on :
- You are hiring a doctor to treat you. This ID doctor does not have the education and knowledge required to treat lyme disease.
Just cancel the appointment. And find a better doctor who had the knowledge, skill and experience.
We've all been there, with many doctors who did not have the skill. And we paid dearly, not just with money but by missing years of our lives. We hope you find a doctor worthy of being call "doctor" as there are many who are not.
Lyme is a very, VERY complex infection. There just are not that many doctors who know all about it. Find one who does.
This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol. Please go to the link and read the whole article.
And, oh, you should get credit for all this work. You will, actually - you'll get better, we hope, with the right doctor.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...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 [body-wide], neurologic [brain], and cardiac [heart] complications could be avoided..."
. . . .
- Full article at link above. -
Posted by Dekrator48 (Member # 18239) on :
It will do you NO GOOD to try to reason with the ID Dr about not needing the spinal tap.
If the Dr understood this, and Lyme, to begin with, the Dr would never have suggested the spinal tap.
It is like talking to the WALL!
Go to the EXPERT!!!!!
You do not need another test to confirm LYME!
You have all the proof you need, now go find a LLMD and save yourself the misery that we all experienced!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted by mcg08002 (Member # 24617) on :
Yeah my infectious disease doc, she wants to see if there is anything else in my spinal fluid. I want to go to the ND that is 4 1/2 hours away, she has had GREAT reviews for lyme. She specializes in it. A lot of people on here go to her. Its just I am a university student, and I am trying to pay for a wedding right now, and I do not have a car to travel to Montana where she is located. I dont know what to do.
Posted by Lymetoo (Member # 743) on :
Does this ND use antibiotics?
It's YOUR body and YOUR money. Cancel the apptm with the ID. OH, I've already said that.
Sorry for repeating, we're just trying to save you. I hope you read the link I posted about the spinal tap nightmare. You need to know what you're really facing.
Posted by karenl (Member # 17753) on :
Stephanie,
do you know how much they get for a spinal tab? Then you probably understand everything !!!
I paid 1,980 five years ago only for the spinal tab. Then you also pay for the follow up after 24 hours (the dangerous time) and follow up again after 3 days. Most people need a lot more treatment as they get complications or at least call the doctor several times because they feel so bad.
You can add up.
Posted by LightAtTheEnd (Member # 24065) on :
Shoot, then for the price of a spinal tap, you could buy a car.
Some colleges have "ride boards" where people post about needing rides home to another town or state, where they can find other students who have a car and are already going there. Maybe you could find a classmate from the same part of Montana?
Posted by Keebler (Member # 12673) on :
- You already KNOW you have lyme, one of the most toxic infections there is. What more do they need to know?
A good LLMD will assess for other infections and a spinal tap is not needed for those.
Just because you are young and the doctor is older, he has no authority over you. You are hiring him for his knowledge. Regarding lyme, his knowledge is lacking. So would you hire someone who does a poor job for you in any other facet of life?
What I might do is ask him them, EXACTLY what other infections would they be testing the for with the spinal fluid as you'd like to study a bit about the other possible things that he thinks might be going on.
My guess is that he will have no answer for you because this is standard practice for denying lyme treatment. Spinal taps are very poor tests and usually won't show lyme - so they use a poor test, say you don't have it and refuse to treat.
Your future is also in danger from now on if that is in your chart because no doctor would ever then even look at the other positive lyme tests or your symptoms.
Now, if you were in emergency, sure, a LP may be helpful as there are other brain infections that can be very serious. But, your tests are positive for a serious infection that he should have already been treating - and he's not. So that tells you he is not about to treat for lyme.
I'm so sorry to be so strong about this. We want to see you get the care you need. Take care, now. -
Posted by Siciliano (Member # 15920) on :
Hi, dear Stephanie--when you first told me about what the ID Doctor wanting to do the spinal tap and I told you NOT to do it and to post it HERE in "Medical", I knew that everyone who had so much experience and knowledge would be very honest with you the way I was honest with you.
Well, now that you see how many concerned, helpful members we have here in "Medical", you MUST know now that we ALL can't be WRONG if everyone of US are telling you the same thing. Don't you agree Stephanie?
How could all of these concerned members feel the exact same way about your ID Doctor??? NO, this is NOT a coincident, NO way.
Now, it is no longer ONLY ME begging you not to do the spinal tap but "36" other dear members!
I knew when I told you to post this situation here in "Medical" that you would ONLY receive the most honest advice and I think "36" dear, members are doing just that, oh, yeah, and don't forget I was the first one to tell you NOT to go back to that Dr. nor get a "waste of a time" spinal tap!!
No, dear Stephanie, "37" of us CAN'T BE WRONG!!
I know now that you have these inputs from so many others.......I'm sure you will make the right decision. Posted by Keebler (Member # 12673) on :
- Stephanie,
I'm guessing you've not yet been able to see the DVD of the documentary about lyme: UNDER OUR SKIN.
My personal helper will be here on Saturday so I could have her mail this to you as a loan for one week's time. But I'd need to know in advance as it's a very narrow window of time when I have someone who can run errands for me.
You can also ask if anyone in your local lyme support group has a copy they can loan you. After you see it, your family should, too. I could extend the loan time if that would help.
Normally, I'd say never give out your personal information to ANYONE on a bulletin board. So, I could mail this to the main desk at your dorm or to some other university office where you could pick it up.
No need to reply if you can get it elsewhere but as you want to teach and travel and see the world (as you wrote in your profile) . . . the experience of viewing this documentary will not be lost on you at all. Perhaps some of your close friends or even instructors would be interested, too.
Just PM if you want this mailed out on Saturday - and send a safe address where you can pick it up.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
-
Posted by mcg08002 (Member # 24617) on :
I called the ID. She is saying that she is worried about there being other stuff in my spinal fluid such as lyme stuff, cells, and glucose level stuff.
Gah, I feel so torn. I am just worried that what if there is something else along with lyme.
Posted by Keebler (Member # 12673) on :
Topic: University Student. These are my Test Results. Spinal Friday. -
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by mcg08002: She is saying that she is worried about there being other stuff in my spinal fluid such as lyme stuff, cells, and glucose level stuff.
The Western Blot IgM shows an active Lyme infection.
She does not need the spinal tap to diagnose Lyme Disease, although she is telling you otherwise.
When they look for Lyme bacteria in spinal fluid, they rarely find it, as the bacteria burrow into tissue and nerve cells to live.
If you have other symptoms and need a spinal tap in the future, you can always have it done then.
As Keebler said, there is the distinct possibility that you could have complications. You might end up flat on your back for two weeks, unable to attend to anything else.
You could tell her you'll get back to her about that test after exams, that you have too much going on to risk it.
Carol
Posted by Robin123 (Member # 9197) on :
This test can cause health complications afterwards for many, like severe headache, so in my opinion, I don't think it's a good idea to subject yourself to a potentially severe test.
Given the list of your symptoms, and already positive Lyme tests, it would be better to start treating with a Lyme-literate doctor and let this infectious disease doctor go, who is not offering to treat you at this point, even tho you now have positive tests and symptoms.
There are a lot of politics involved. It is best to go to a Lyme-literate doctor in our lymenet doctor list.
Posted by kday (Member # 22234) on :
What the hell. That is not a false positive! You have Lyme Disease.
Does your doctor have their head buried in the sand? No spinal tap.
He probably believes the nonsense that your body should seroconvert to IgG. Not necessarily with a stealth pathogen like Lyme.
Posted by Karen Mc (Member # 23354) on :
Today is Thursday and I hope and PRAY that you cancel or at the very least pospone the S.T.
Everyone has given you great advice and are truly concerned for you health and welfare.
As stated above S.T. are very expensive and if necessary (you're afraid to offend Dr) use the excuse someone mentioned..."I would like to hold off testing until the end of the semester" that will "buy" you some time.
In the meanwhile you can check into other Dr's. PLEASE listen to us...
Take it from some "olde-timers" who have been around the block a time or two.
I will be praying for you that you get a way to the Dr 4 1/2 hrs away. Trust me, God can work miracles...He has EVERY day for me and especially since I finally realized what was ailing me I see his "help" with me dealing with everything.
If I lived close enough to you I WOULD take you to the Dr myself!!! Since I can't, I will do the next best thing and pray that God will provide a way.
My LLMD is also 4 1/2 hrs away as well...I was too sick to make the drive, my car is 14+ yrs old and would NEVER have made the trip...I was worried to death but soo sick...
I prayed and prayed and he opened the door and It worked out that someone was able to take me...then the next time I had someone (OUT OF THE BLUE) call and tell me they had rented a car for me to make the trip the next time--GOD IS AMAZING-PEOPLE CAN BE AMAZING!!!!
Since you are a college student I assume you are relatively young...
Honey, I just turned 50 last Nov. I had gone back to college to continue my education when I finally became so sick I could no longer function!!! I was on deans list at one of the most prestige Christian Colleges and I was quite proud to be actually attending...Well I had to drop out and everyday I miss it. I want to go back...ABSOLUTELY at this time impossible--just not physically or mentally able and my Dr keeps saying ...maybe later...maybe later...
My point is, YOU have the rest of your life...please get PROPER treatment now....in the long run you may beable to avoid all the heartaches, pain and misery many of us are having to endure.
We have no choice, we are having to deal with the hand we were dealt at this time but YOU DO HAVE A CHOICE!!!
I also have a son 17 who is a senior and was hoping to go to college next year. I am VERY (99.99%) sure he has lyme as well...I am afraid for him, afraid to get him tested...worried as we have NO insurance and treating me is ALREADY extremely hard on us...BUT
I know I owe it to him to find out and help him so that he DOES NOT end up like me.
I PRAY and WISH to God I had known 15, 20 or so years ago what I know now about Lyme...but you have to deal with things when you do find out.
Although I am having a hard time I believe God has shown me FINALLY I have Lyme so that...1) I can begin to take CONTROL of my life 2) help my son NOT go through what I am and 3) to help and inform others!!!!
Sorry so long, but my heart goes out to you, as I know how I would feel if it was my son on this site crying out for help.
PLEASE listen to us...DO NOT do the spinal Tap NOW,,,, there will ALWAYS be another time if turly necessary.
Take care, May God be with you and let us know how its going. There will ALWAYS be someone hear to listen!!
Love, Karen (:
Posted by Beachinit (Member # 21040) on :
Hi Stephanie/mcg,
Weird that my daughter just moved from Bozeman after rooming with some students there and her name,,, you guessed it Stephanie. Now if you were she I would ask you the following questions.
Does your college have a medical clinic? Maybe you could discuss your situation with them first? Maybe they can help you find a Lyme treating doctor (just hate the word literate). If you do not have health insurance then your money would be better spent getting the antibiotics and supplements you need to begin fighting the diseases that tick injected into you. Lyme is not just a brain disease that is just part of it. It would be better if you could find an MD/DO/FNP/PA to treat all of your symptoms. ID doctors tend to focus in and follow the book. They look at the trees and miss the forest.
Oddly enough if you had say tuberculosis the ID doctor would treat you appropriately for 1-2 years if necessary with the right antibiotics and you would be better off for it. Unfortunately ID doctors follow IDSA guidelines generally speaking in the case of lyme disease and the guide is treated as definitive in all cases regardless of your particular situation, its kind of like one size fits all.
If you deliberate and use the education and knowledge you have and are still acquiring you will make a choice that is best for you.
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