sparkle7
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posted
I guess it gives people a sense of security. Why would anyone want to take huge amounts of abx without some kind of confirmation?
I can agree with you here, massman. I stopped the abx & the testing. I didn't see the point of either. I'm not telling anyone to do what I did. I just don't see the logic of it.
I did do 9 months of abx - just so people know. It didn't make me feel better or worse either way. I became ill from the side effects so I decided to stop for a while. I never went back to them.
six you said a positive test can confirm a diagnosis - how? If the tests are inaccurate, why would a positive diagnosis be correct?
Some people were suing a lab in FL due to false positives. They took the abx & had to get their gall bladder removed due to extreme side effects. There was no "proof" that they actually had Lyme. I don't know who's right here but it is troubling.
Not everyone who has these symptoms actually has Lyme. They may have something else. We really don't know what is what until there are more accurate tests for everything - CFS, XMRV, Lyme, co-infections, Fibromyalgia, Gulf War Syndrome, chemical sensitivities, on & on...
It's all just educated guessing as far as I could see. Why spend $1000s on drugs that may be totally wrong for us - not to mention the side effects? It's really a gamble.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
A clinical diagnosis trumps testing, as there can be many false negatives as everyone knows. And for most co-infections, they can't even test for a large percentage of strains.
I agree with the above regarding confirmation, however.
There is no harm in getting tested (at least if your insurance pays for it), as a positive does provide several things:
Proof for insurance companies Further evidence backing up the diagnosis A certain peace of mind for the patient
I wouldn't suggest a spinal tap, or paying thousands of dollars for tests. But a positive test would back up a diagnosis, so again, there is a point to getting some testing done.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
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posted
Aside from the many points already made, if the test is positive, it gives a person some confidence in which direction to go next and could shave years off the quest to recover their health not to mention giving one hope that they will recover. That's huge when one has an illness of unknown origin.
It could even make a difference as to whether one ever recovers their health. One wrong turn can use up years of time and suffering not to mention a lot of money.
Sparkle - if one is producing antibodies to parts of the spirochete and those antibodies are associated only with borrelia then we know that person has had exposure. If one has symptoms of lyme disease then it's not much of a leap to think that would be a good place to start to treat. My understanding is that false positives do not happen very often.
There could be many reasons why a person does not improve on abx even if they truly do have lyme. That's why an LLMD who knows the issues is important. They can uncover mitigating factors and treat appropriately.
I showed only minor improvements the first year of treatment. I didn't see significant improvement for several years. During that time we uncovered quite a few issues and started treating those issues as well as lyme and co-infections.
It would have been a lot harder for me to spend the money, time, energy etc. unless I had pretty good evidence that Lyme really was the issue.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
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posted
Are there any statistics of the amount of false negatives compared to false positives?
Alot of other illnesses have the same symptoms as Lyme...
My Western blot would have been considered negative in NY State. It was my doctor who suggested Lyme. I'm not real convinced about it due to my response to abx.
I don't have enough money to go through all of the tests again now.
I get the impression that if you go to an LLMD - they are going to think everything is Lyme... Just like if you go to a surgeon, they are going to tell you that you need surgery or a dentist is going to tell you that you need some dental procedure.
This is how they get paid. It's a little cynical, I know... but this has been the case for me lots of times in my life. How many unnecessary procedures are done & how many unnecessary prescriptions have been filled?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Testing is one of our greatest data gaps with regard to Lyme and other vector borne infections. The exposure testing we have is controversial and inaccurate at best. Antibody testing is not always proof of actual infection and can lead to red herrings, antigen testing is incredibly insensitive at the current time. However, we still need to use ever resource possible to confirm and evaluate diagnoses.
The fact of the matter is, many chronic diseases caused by very different pathogens have many of the same symptoms - fatigue and brain fog can come from Lyme itself, a bacterial/protozoan/other pathogen, systemic deregulation or damage secondary to infection etc...
Right now, even /some/ of the "experts" who charge $400 a visit address chronic illness with a shotgun "We'll keep throwing treatments at you until something works" approach. "X didn't work? Well, maybe you have (Insert rare and difficult to document condition Y here). Lets treat for that". Even under the very best of circumstances this is a flimsy way to practice medicine but alas becomes a method of last resort. However, in the case of Lyme and TBI, "known" treatments can be dangerous and "experimental" ones often have no concrete proof they actually work; All of them can be expensive. It isn't good enough to keep throwing Tindamax or $600/month herbal protocols at people in the hopes you'll finally hit something. In the very near to a decade I've been involved in treatment and research, I've found far too many people who assume this is the best that can be done.
We need better, more accurate testing through scientifically verified modalities
Posts: 690 | From East coast, USA | Registered: Jun 2006
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quote:Originally posted by sparkle7: Are there any statistics of the amount of false negatives compared to false positives?
Alot of other illnesses have the same symptoms as Lyme...
My Western blot would have been considered negative in NY State. It was my doctor who suggested Lyme. I'm not real convinced about it due to my response to abx.
If talking about the WB, there are stats on the Igenex test which mention the percentages of false positives vs negatives. I can't recall exactly, but a positive Igenex had somewhere around a 4% (I think) or so false positive rate (based on their testing). I expect that number will be higher depending on if the patient had viruses and/or band 31 is positive.
But that just means exposure, not necessarily that the person has Lyme disease. That's why a diagnosis is important.
I'm not sure if co-infection antibody testing has a false positive rate at all. I suppose there could be some cross-reactivity depending on the strain, but I'd think a positive co-infection test would be a good indicator overall.
My ILADS doc tests, but goes by reactions to antibiotics as the real determining factor. If you've tried several different combinations of antibiotics, and treated for co-infections too, with no response at all (good or bad), then I'd say you aren't probably suffering from a tick borne illness.
[ 06-16-2010, 05:35 PM: Message edited by: Lemon-Lyme ]
Posts: 584 | From NY | Registered: Feb 2009
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susank
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Member # 22150
posted
I have some positive bands but negative Dx. Tested Igenex. I got to thinking - if I don't have LD - why did those bands show up? They indicate something, right? Something that might be cleared with meds/herbs/whatever? I am thinking/hoping that with my elevated white blood cell count and subnormal Immunoglobulin G and subclasses (prone to infection?) and symptoms, that my doctors would have reason to prescribe Ab's.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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TerryK
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posted
sparkle wrote: I get the impression that if you go to an LLMD - they are going to think everything is Lyme... Just like if you go to a surgeon, they are going to tell you that you need surgery or a dentist is going to tell you that you need some dental procedure.
Most ILADS LLMD's do a very good differential diagnosis looking for any other illnesses that will cause symptoms similar to lyme. That is part of the clinical diagnosis process. Most people who go to LLMD's have been through every test under the sun before they even get to the office of an LLMD.
For myself, for decades I was told I had fibromyalgia and chronic fatigue syndrome and dysautonomia (low blood pressure, low blood volume) a kidney disease, all with no known cause. Of course no one really looked for a cause and I was refused a lyme test many times because "there is no Lyme in Oregon".
I was offered no treatment except pallative care. I was getting worse very quickly and suffering greatly. Every day I was thinking about suicide.
4+ years into treatment I am not well but I can at least enjoy life without dozens of horrific symptoms and all over body pain that made it very hard to move my body (70% better).
For the purposes of enjoying better health, I don't really care what they call my illness as long as I am better. I'm just very happy that some doctors will take a chance and treat this god awful illness.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
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posted
Funny - I went to the Fibromyalgia & Fatigue Center & they told me I had Lyme... after spending about $10,000 on testing & "stuff".
I agree with Blackstone. How can we treat this when we don't know what it is?
I think I actually know more than my so called LLMD. I hate to say it but the $300 or $400 an hour is a waste & a rip off at this point. It all seems like trial & error. If you happens to come across a doctor who gives you something that helps - then you think he/she is the best doctor in the world ("you" in the figurative sense, that is).
It just seems kind of random to me. Not what I want to spend $1000s of dollars on - not to mention the side effects.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Unfortunately, it is trial and error. Not everyone reacts the same way to meds. And using meds as a 'trial' sometimes is the only current way to diagnose the problem.
Unfortunately in many cases, it ends up costing 1000s of dollars to do figure out what meds may help, or not.
Only thing I can recommend is find a new (and cheaper) LLMD or perhaps travel out of state to one who takes insurance. Not every LLMD costs a fortune. My ILADS doc takes health insurance, for instance, and I know some others do as well.
Posts: 584 | From NY | Registered: Feb 2009
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posted
Terry hit on a good point. It doesn't matter what anyone calls it or what the treatment is. If you are better or "cured" that is what counts.
Life without lyme is WAY better than WITH!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sparkle7
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posted
I haven't had insurance for the last 10 years... Last time I called my doctor in CT, he charged me $165 for 1/2 hour on the phone. He didn't even know what XMRV was (plus he spent about 5 minutes talking to his kid on a cell phone).
3 years ago when I asked him if I had any co-infections he said he didn't think so based on my symptoms. Now, he's telling me that I have babesia & I should take Malerone & Zithromax... Yeah, right. I'm going to run out to Walmart right now & get it. - Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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WildCondor
Unregistered
posted
I agree, that's why people putting western blot #'s in their signatures annoys me so much, it sends the wrong message. LYME IS A CLINICAL DIAGNOSIS, END OF STORY!
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massman
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posted
So it is almost like people, doctors, insurance companies etc. DO NOT TRUST clinical diagnoses !
LOL a bit as about 20 to 30 years ago t5he doc that got the correct diagnosis first won the game !
Finding an effective treatment was just about an afterthought !
Why are so many docs so uncomfortable with giving a clinical diagnosis and so many patients so uncomfortable accepting that ? ? ?
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posted
My clinical diagnosis was Somatization Disorder. Sometimes clinical diagnoses are wrong, so testing is a nice thing to have for confirmation.
I was also clinically diagnosed as a hypchondriac, and it was suggested by a doctor in the ER when I was in college that I drank too much (????, yeah, like I felt good enough for THAT?!)
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
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posted
A million people accept a clinical diagnosis and are more than willing to take antidepressants by the handfuls based on that clinical diagnosis. Doctors don't think twice about handing out psych meds or even pain meds for that matter; and most people don't think twice about taking them.
Yet when it comes to something like a bacterial infection people want to see the proof in blood; and the thought of taking antibioitics for a few years scares them more than taking pysch meds for the rest of their lives. That one is just hard for me to figure out!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Keep in mind that we can't assume everyone is seeing an LLMD, or even if they are, he/she is a good LLMD. Some people can't even find an LLMD in their region or one they possibly could afford.
So for them, testing is a way to provide proof of their disease.
Hardly an ideal situation, but if you want to know why some people are obsessed with testing, I expect that is a reason for many.
And even when people see a good LLMD, they typically would like to see proof via a lab test too. It's human nature.
And although flawed, I believe co-infection testing can be important. An example: I tested positive for Ehrlichiosis + Rickettsia , so was given Doxy first, even though it was Summer at the time. Since I also was diagnosed (and tested positive for) Lyme and later Bartonella, there was no way to differentiate the symptoms between the other tick diseases and Ehrlichiosis. So by testing, we did learn something useful in regard to what meds to start out with. There is a big overlap with symptoms and various co-infections, and a positive test could help with medication decisions -- especially for the more dangerous ones, like quinolones, or expensive meds, like Mepron.
Posts: 584 | From NY | Registered: Feb 2009
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posted
I don't see lyme treatments as any different to the experimental treatments and guessing games going on in cancer, psychiatry, ms, lou gerich's and many other diseases.
I also don't feel people infected with lyme disease are any less desperate than those with the above illness.
No one knows what causes these illness and basicly are just thowing everything they have against thier illness.
For me personally I am so grateful that with the use of sites like this, Psychiatry, infectious disease doctors, LLMD doctors, laboratories and everyone including you guys that do research and offers it up for public use.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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massman
Unregistered
posted
6 - I should be more clear, meaning a CORRECT clinical diagnosis.
IMO the ones you got are CYA generally BS babble. I feel the docs should say "I do not know but I will find out."
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Pinelady
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Member # 18524
posted
It is human nature to want it on paper..
E = mC2
The failures of the tests have proved one thing.
We need a lot better tests!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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massman
Unregistered
posted
I feel the bug knows way more about avoiding tests than we do !
Probably one of those early adaptor hands on learners that taught it !
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sparkle7
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posted
In a normal situation, we could monitor our progress with accurate testing. Since the testing is not accurate - it seems pretty useless to me.
I guess the results could be used to validate some people or situations depending which way the results were leaning.
There's alot of confusion about this subject. many people who are just diagnosed don't know what to think or what treatment options there are. It's really a mess. I'm not sure why but my thoughts on the subject are that it's intentional.
If they wanted all of this stuff cleared up - there could be a public health initiative to make everything much less confusing. This happened in a few years with AIDS treatment. I heard a health expert taking about it on NPR the other day...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
In my case, the ER doctor thought I had Ehrlichiosis. My titers came back RMSF and Lyme. So testing is required for accuracy in diagnosis. When someone comes in an ER as I did with a temp of 103.2 and history of tick bites, the MD has to start ruling out the differential diagnoses. Later down the road, though, it does seem silly to test for Lyme again, since we know that it shows positive for many years after treatment, or that it at times shows negative when there is a definite bullseye rash. But at least at the start of illness, they have to at least see what the bloodwork shows....it's a start!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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massman
Unregistered
posted
I really agree with sparkle.
If the testing is so inaccurate then why bother with it.
Blood testing sucks as it hardly ever shows anything, EVEN WHEN YOU HAVE LYME.
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sparkle7
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posted
After seeing what a mess it is with Lyme, I wonder how inaccurate it is with other things now... I wonder how many doctors slant their opinions on how to read them to prescribe more drugs (even bio-identical hormones & stuff like that) to make extra profits for the drug companies.
I have serious doubts when my doctor prescribes me things. I know he gets kickbacks from the supplement companies... I hate having to be distrustful like that but it's the truth. How can someone have an open mind when they are getting paid? How can they be making the best decision for me? It's just unethical.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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massman
Unregistered
posted
sparkle - it can be unethical. Doesn't have to be.
One of the best lessons I got from Chiro college was this:
One day in a hands on adjusting class someone asked the teacher if a current patient came to his clinic and after a short exam there were NO indicators an adjustment was needed, what would you do ?
He asked if we really wanted to know. When some students said yes he said " I would put my hands in my pockets. And walk away."
Just because an opportunity exists does not mean someone will always be taken advantage of.
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sparkle7
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posted
I agree but what are the chances of finding an ethical doctor...? I've been to many & I can't say that I have found one.
I always hope for the best but I haven't been to one that I can recall in my lifetime - except maybe for a bio-feedback therapist. He was a PhD - not an MD, though.
I think something happens to people during the process of going through the education. Some kind of conditioning... If there are some ethical doctors - my apologies. It just hasn't been my experience.
Most people are self involved not selfless. It's rare to find someone who is empathetic & not self serving.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
As for the obsession with testing I feel it's simple... Why would you want to put a ton of abx into your system if you didn't have to. Plain and simple it's scary not knowing.
As for the ethical doctor issue yes I have had many encounters with docs I would say are unethical. However, my pcp I feel is very ethical and caring but she doesn't agree with treating me for Lyme since I have never had a single band show up.
Yes when showing classic signs rash, fever known tick bite Lyme can be a clinical diagnosis. However this gets more difficult the later into the stage of the disease... As Lyme cause sooooooo many symptoms but so can so many other infections and things that can affect the body. So once again it comes down to basically just another Dr taking a guess as to what is wrong with you only this one is an llmd.
Along with this Lyme effects so many people differently... There were people here who could excercise play golf and work all throughout their illness. While at the same time there are people who lost the ability to move, had seizures and lost all ability to function.
I think it would be very hard for someone to go to an llmd and not be told they have Lyme. The clinical diagnosis of Lyme is at some point and time you could have been bit by a tick and you have symptoms. So yes we need to not fight for doctors to treat us long term but we need to fight for accurate testing.
Posts: 286 | From St. Louis | Registered: Dec 2009
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massman
Unregistered
posted
Perhaps I should have titled this thread "Obsession With INACCURATE Testing" ?
Our beliefs that the current body fluid testing can show everything affecting the body is pretty stupid.
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gwb
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Member # 7273
posted
Since we're talking about the various methods of testing, and the reliability, or lack of reliability, of testing, I started thinking back to all of the tests I've had from two LLMDs's, and all of the abx I've taken, and still continued to get sicker and sicker.
It wasn't until I had a Bio-Resonance Scanning (BRS) test that I was finally able to get on the road to health again. My question is, why don't we consider alternative testing and put more faith in this type of testing since it appears to be producing good results for a lot of people?
I think I know the answer that many of you will give, and most likely it will be the same answer I had for avoiding this type of testing and the treatment and therapies that come with it. But since we're discussing this I thought it would be interesting to bring this into the discussion and see what others have to say about it.
For those who aren't familiar with BRS testing, I copied and pasted from Dr. Jernigan's website what it actually is.
"Based on the realizations of the crystalline matrix and photonic (light) aspects of the body, Dr. Jernigan developed an adjunctive diagnostic and treatment technique that enables the healthcare professional to diagnose and treat dynamically, in real time, with the purpose of restoring optimal coherence of the body, mind and spirit. This technique is called Bio-Resonance Scanning� (BRS).
The ultimate purpose of BRS is to identify specific frequencies of incoherence, from any source, in the tissue (pathology) and, using carryover resonance, identify the corrective remedy or modality (treatment) that will ultimately restore global coherence.
BRS utilizes a novel understanding of testing the body that does not rely on measuring the body's reactions to frequencies (a problem since the more degenerative the condition, the less reactive the organism becomes), such as in electro-dermal screening, nor does it rely on meridian testing.
BRS can be sequenced into frequency-sentences to obtain more specific information. It is registered by frequency matching and therefore is more objective in its findings. At last review, the results of BRS diagnostic findings have been confirmed by blood tests about 86% of the time.
The crystalline matrix carries or radiates the frequency created by the doctor/practitioner to the pathology in the body and back to the resonator, the actual photo-electrical-resonance detector.
BRS enables the doctor to determine highly specific information - not only the presence of a pathology, but its degree of priority for healing in the patient's body". Source: http://www.hansacenter.com/brs.php
I thought it was interesting that the "results of BRS diagnostic findings have been confirmed by blood tests about 86% of the time". Isn't that as accurate, if not more accurate, than the results of a blood test from a lab, whether it be Igenex or any other reputable lab?
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
I found some other links related to BRS that I believe many of you will find interesting. To be honest, I don't understand half of it. I'm a very simple minded person (another way of saying stupid I guess), but many of you here will understand this and might appreciate learning more about this fascinating subject.
Feel free to comment on it as I would like to learn and understand more about this myself.
Here's a 45 minute audio from Dr. Jowdy, who is Dr. Jernigan's associate doctor. It's titled: "Principles of Bio-Resonance Scanning".
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