I know most of us on this Forum are pro-Lyme diagnosis when symptoms are present, but for arguments sake:
How do drs determine what is a false positive on a test? And If you first take the Western Blot and it is positive for certain Lyme bands, then if you retake that same test would those bands still remain positive or dissapear?
And how would a positive for Lyme and a positive for a co-infection both be false positives? Shouldn't it further prove that something is going on? Are the tests that inaccurate?
Other than switching drs, how do you prove your test is not a false positive, or when do you accept that maybe it is? If we agree that it isn't Lyme, than do false positive tests indicate other illness or are they just thrown away?
I have so many questions right now, and I don't know which people to believe. If I have Lyme, I want to be treated for Lyme. But if I don't, then I am fine to move to the next dr that thinks they know what it is. I've been riding this merry-go-around of doctors for 7 years, so it isn't anything new.
Right now, my various drs are fighting over my Lyme diagnosis and want to say I dont have Lyme bc I have gone 4 weeks of no improvement on iv and oral meds. My symptoms are actually worse than before. And that my tests are probably just false positives. I have lots of articles to support myself, however they come armed with their articles and standard guidelines (which we all know are bs).
I know the tests are sensitive, and even if you are "cured" of Lyme, you can still test positive for it years after the initial infection is treated. And I know about the chronic Lyme debate and about how long-term treatment is needed when you are in the late stages of Lyme.
But how do you actually prove you do have Lyme when the tests are inaccurate and your symptoms mimic other diseases as well? I'm feeling really overwhelmed right now, and I have no one to help me figure this out.
As an FYI...my tests were not CDC positive although I had several Lyme bands show reactive in both the IGG and IGM categories. RMSF test was WAY positive unless that was a false positive, too. No other co-infections were positive.
Posted by lpkayak (Member # 5230) on :
Yes the tests are that inaccurate
There arent many false positives
Someone may say it is false positive-but it isnt false
If you read explanations of why testing is inaccurate you will begin to understand but as time goes on and we learn more it gets more complicated
Tom grier a scientist has a good explanation and so does dr c
I will try to post links but i have helpers coming soon so if anyone else can post it might befaster
Or you can search on here-or look at threads at the top
on top of the explanations above i remember when my llmd got results that had been marked negative at the lab, but when he read the specific numbers he said they were cdc positive-no question-so that can be a problem too
Posted by Lymetoo (Member # 743) on :
There are no false positives. So any positive is considered "False" to them. They do not WANT to find Lyme. They do not want to TREAT Lyme.
It's that simple.
Posted by Catgirl (Member # 31149) on :
A big part of the problem is we have all been raised to believe western medicine to be advanced at determining any and all health issues. Unfortunately, it is not, at least when it comes to chronic issues like lyme and company. Another huge issue here is due to the evidence based medicine gold standard. It's not reliable.
The blood tests are not accurate because lyme and company are not free flowing around wherever your blood is drawn. Lyme and co infections are designed by nature to avoid detection. They live deep in the tissues and can do things that western medicine hasn't figured out yet. This is why symptoms rule.
If the patient feels sick and the patient tested negative, the test was wrong. If the patient feels sick and the test is positive, it's not a false positive due to a clinical diagnosis. Symptoms rule. Unfortunately western medicine postured docs to believe that people want to be sick, hence the term hypochondriac. Their egos are simply too big to accept otherwise. That and the out of date guidelines the idsa puts out.
After spending many years learning about medicine, the docs only believe what they were taught. They truly believe they are helping people, when in fact, they are failing them when it comes to lyme and company. Again, the biggest reason for this is due to the antiquated guidelines the idsa puts out.
Many patients finally see the light and realize the need for a positive blood test becomes unnecessary for them since they still in fact feel sick, so they seek out an LLMD for treatment. Proof is moot if you still feel bad and are getting no answers from your specialists.
I've met people who are truly stuck on the evidence based medicine model. They HAVE to have a positive test, and they search for every little thing western medicine has developed a name for, even though it has never determined what causes their symptoms (lyme). These people are stuck in a circular system that is flawed.
There is a really good book called: Cure Unknown (Weintraub) worth reading. Also, an award winning documentary called: Under Our Skin.
I've read some of these articles and watched the film. I am on the list to get the book from the library (next in line actually). I just don't understand why drs are saying tests results are false positives and the symptoms are something else. Its so frustrating to know who to trust.
I had finally found a dr that believes in Lyme and even fights for Lyme advocacy in the state. She has other Lyme patients who are improving with oral and iv antibiotics. I've even read Lyme thank you letters taped to her wall. She even helped me convince my PCP it is Lyme.
With that said, she told me Friday that she expected some "betterment" in me after 4 weeks of treatment or at least ups and downs. Instead, I have mostly just gotten worse. She has given me one more week to show some improvement before they decide to pull my picc line and retract the Lyme diagnosis. No pressure, right?
If that happens, they will then refer me to one of their neurologists and rheumatologists (aside from the ones I currently see), or a pain management dr. Thus back on the merry-go-around.
I feel cheated. I remember them saying I would notice some improvement in 4-6weeks, but I don't remember them saying they would cut off treatment if I didn't show improvement within this timeframe.
I guess I can either lie and say I feel improvement to buy me a few more weeks; or I can be honest, have the picc line removed, and start all over again. I'm not a big fan of the first choice, though, and don't feel like I should have to.
Sorry I am ranting. I'm just really stressed right now, and the few LLMDs I was able to call that are nearest to us are way too expensive for us and aren't even seeing new patients right now. My husband loves me, but I doubt he is willing to max out a credit card when there are so many skeptic drs that are against a Lyme diagnosis. Ugh.
Posted by GretaM (Member # 40917) on :
I didn't start feeling better until month 3 on IV abx.
Month 4 and 5 has been like a jet plain taking off.
A true LLMD would expect you to feel worse around week 4..
And around menstruation.
For me this means 2 weeks of every month I feel pretty awful.
Lyme cycles every 4 weeks.
4 weeks on IV abx will not even adequately get one cycle...
Can you convince that doc to try for 2 months.
In the meantime you can find a true LL doc.
Sorry you are going through this.
As I go through treatment... More bands show up on my western blots. My immune system is getting stronger.
No such thing as a false positive. The immune system will not produce antibodies for something it has not encountered before. Period. End of story.
If it has not seen an OSp C protein on a certain strain of Bb before... It will not produce a response to it on a corresponding band on a western blot test. Period. End of story.
Any physician who tells you differently does not understand basic immunology and basic lab tests regarding bacteria.
Granted, there is some controversy regarding the 41 kda band as it corresponds to flagella. Lots of bacteria have flagella. True.
There is a great thread on here on why just this one band is important.
But in China... If band 41 shows up on a WB for a lyme test, the patient is considered positive for lyme, and is treated for bacterial infection.
So, it is up to you to decide what you want to do with your health.
I was RMSF and lyme positive also.
Oral abx for 6 months, many high dose combos before my LL decided to go to IV. 3 months IV, not much improvement. I was very discouraged.
A bit of tweaking in doses of my abx, and bam-o!
Improvement!
Are you on just IV rocephin, or does your doc have you on orals as well? And what dose rocephin are you on? Burrascano high dose? Or IDSA low dose?
hang in there. Keep fighting.
Posted by MichaelTampa (Member # 24868) on :
They say it mainly because they are unintelligent and incapable of thought, and they were told to believe it and say it. That really is the beginning and end of the story.
As far as the truth, well, the western blot tests are antibody tests, so, obviously, it is possible to have antibodies in your blood to something that no longer exists in your body. Perhaps it is very unlikely, but no doubt, in theory, this can happen, so this would be the basis for saying something is a false positive. There is no way to prove that something is a false positive.
You can prove that you really have lyme in your system, and that is it not a false positive, by taking a test that extracts/grows the actual lyme spirochete from your blood. There are one or two recent tests introduced that do this now (hopefully someone else can chime in with details). If you're positive on that, then that's it, if the bug is there, it is there, end of story regarding whether you are infected. Of course, it is another question whether that bug is causing any symptoms you may have, it is difficult to prove or disprove anything of that nature.
Posted by TF (Member # 14183) on :
You said:
"my tests were not CDC positive although I had several Lyme bands show reactive in both the IGG and IGM categories. RMSF test was WAY positive unless that was a false positive, too. No other co-infections were positive."
So, sorry to say, but with those kinds of test results, you are going to need to go to a lyme specialist to keep the kind of thing from happening that is happening with you right now.
Nearly all of us have been abused as you are currently being abused at the hands of non-lyme literate doctors.
The only way to keep from being bloodied is to go to the side that totally understands lyme disease and never go back to a non-lyme doctor again.
It sounds like your current doctor believes more than many non-lyme doctors, but his/her stand when it comes down to it is what you are currently experiencing.
Good lyme doctors don't take insurance, they are expensive, and they are few and far between. A good lyme doctor will EXPECT you to feel worse when you first begin treatment.
I am telling you, you have to get to a lyme expert to keep from getting this treatment. We all had to learn that. I learned it the hard way. I didn't know anything about lyme and lyme doctors when I was first diagnosed. So, I went to various doctors I was told to go to--an ID doc, a neurologist, etc. They both undiagnosed me with lyme, and I had a positive lyme test, not like you.
So, this is the way it is. You have to accept the reality. There are very few doctors who will go the distance for a person who has the lyme test results that you have. Pam Weintraub documents this in her book "Cure Unknown." Nobody would help her teenage son until he got enough positive bands to get the coveted CDC positive lyme test.
I had the coveted test result, and still the docs I saw called it a false positive. The neuro called it that after he had me do a spinal tap and there were no lyme antibodies in my spinal fluid.
The ID doctor didn't accept my positive test because I didn't see an attached tick and I didn't have a big rash (just 13 little ones) and because she didn't believe that anybody could have all the symptoms I had. (I had been sick for 10 years by this time.)
So, this is just how it is when you possibly have lyme disease. Get to the doctors who will take you seriously, know tons about this disease, and will try to help you in spite of the danger it puts them in.
I am so sorry this is happening to you. It reminds me of what I went through before somebody told me about lyme support groups and I found out about lyme specialists. My life became calm again when I went exclusively to doctors who specialized in lyme disease.
Posted by Ames777 (Member # 43190) on :
I'm gonna beg that they keep me on it another month, so I can do more LLMD recon. They just bumped me to 2grams of rosephin last week, so I can say my body needs a little more time to respond to the higher dose.
I did catch myself using a 3 syllable word the other day, so that's one improvement. LOL
Please keep your fingers crossed for me. This month has been hell, and I can't imagine having to start over from scratch. I feel so bad for all of the people out there that can't even get doctors to test them for this disease. It's heartbreaking.
Posted by Lymetoo (Member # 743) on :
Thanks to everyone for stepping to the plate and helping Ames. I tried to post more info and couldn't get on the board again.
Then I had to leave for a few hours. I was worried about you, Ames! I was afraid NO ONE could get on the board. It's been funky the past two days!
Posted by lpkayak (Member # 5230) on :
a false positive could happen if the lab mixed up samples so has to be considered
ames you really need a good llmd...this one may have helped you some by getting you on tx early-and that is a lot...but from what she said she clearly is not lyme literate or in any way up to date. it is a very complicated disease.
the longer you wait to get with a good doctor the longer it will take to get well...
you wont be starting from scratch-getting iv is a real success...many of us never could get that
but you need to find an llmd you can work with for the long haul. good luck. someone told you about seeking a doc i hope
Posted by Ames777 (Member # 43190) on :
Thanks for all the advice! When you feel like you are dealing with any type of chronic illness alone, it can quickly drag you into serious depression. You all make me feel not so alone and more optimistic.
I still have my list of LLMDs that I had been researching, so I'll start making calls again.
Posted by poppy (Member # 5355) on :
You are in a state where it is dangerous for a doctor to treat as long as necessary in a case that is already untreated years long. It is not a quick fix. This is why you are being told this and I believe you were warned this would happen. This doctor will only be able to help you a little and then you have to move on, out of state, if you want more treatment.
It is useless to try to convince your other doctors about lyme. Their minds are closed and this will cause trouble for the one doctor who has done anything to help you.
I would get as much as you can of heparin to keep the line flushed after your current doc lets you go, in order to keep the line for your next doc, if you decide you want more treatment elsewhere. Also, get instructions on how to change the dressing etc and the supplies. At least, that is what I did in a similar situation elsewhere, kept the line and moved on to another doc.
This is an expensive illness. You can find ways to reduce the cost and continue on IV if it gets ordered. A lot of us have done that and can give you pointers. Home health service for this is too expensive to do longterm.
You have to decide whether you want to be treated for this illness first, then if you do, get help on how to afford it and where to find another doc. This is an illness that requires a very educated and committed patient. The other kind will not be able to cope.
[ 03-23-2014, 12:19 PM: Message edited by: poppy ]
Posted by Catgirl (Member # 31149) on :
We are in a state such as yours. We eventually realized that we needed to travel out of state for decent lyme treatment. You need to find a lyme literate MD, ND, DO, etc. You can go to www.lymediseaseassociaton.org and they will email you some names.
Traveling out of state for an apt is nothing in the big picture. Sure it costs money, but this is the only life you have.
Posted by lpkayak (Member # 5230) on :
Asking here on seeking a doctor might be better than lda site. I get complaints it is hard to use and out of date
You can also try ilads.org. this is aprofessional site for lyme but anyone can use parts of it-good info too
One of thebest things about lymenet is the emotional support of not feeling alone
Posted by TF (Member # 14183) on :
I don't recommend getting doctors names from ILADS. They give out the name of any doctor who wants their name given out as long as they have taken the very short ILADS course.
So, you could get names of doctors who have never treated anyone for lyme, they just want to learn how to.
One person had an awful experience going to a doctor given out by ILADS. When she got to a good lyme doctor, she told her about the bad experience. This doctor said that ILADS is now aware of the problem and they are thinking about making a test that doctors have to pass before ILADS will give out the doctor's name.
So, far, they have not solved the problem, so I highly recommend that you only get names from others who have had success with a particular doctor.
Someone new to lyme who has only seen one doctor is also not as good of a source as someone who has seen a top notch lyme doctor or two. So, consider the source. A new person is just happy to be believed and to be treated, so they think any doctor is great.
Get names from people who have been around a while, and if the person is cured, the recommendations they give you are the most valuable.
Posted by Ames777 (Member # 43190) on :
in the beginning, I got some names from ILADS, and when I asked about those people on Forums, I got a resounding "no, stay away". Trying to go on personal recommendations now.
Thank you all for listening and offering advice. I have a better handle on things than when I first posted and am talking to a few individual members about referrals.
However, if you have a good one, feel free to PM me! :-)