Testing for Lyme (and Co-Infections) & Symptom Questionnaire - Many Clinicians Rely on Symptoms Not Tests

When people are told "you have symptoms that can be from Lyme", the Lyme literate newbie often thinks they'll go to the doctor and ask for a laboratory test for it as if it were strep throat or something. Those used to insurance-based, organized medicine might not be prepared for how difficult Lyme is to navigate as a patient. Lyme's current tests are a disaster when you look at modern-day medicine's abilities and our expectations -- how can it be that the testing is this difficult of a subject within the overall Lyme / Borrelia subject? So newbies just don't suspect that is the case going in. But it is -- many false negatives.

I like the nonprofit website LymeAware dot org's coverage of Lyme / Borrelia testing, and here's the link to their topic about testing. lyme-aware.org/blogs/my-blog/1184-testing-a-forms-of-lyme-disease.html [1]

Lydia Niederwerfer, who founded LymeAware, moved to Colorado after having been diagnosed and treated for Lyme / etcetera, and ironically moved to the area where I grew up, which I suspect has a massive number of people who do not know have Lyme lurking and causing the health symptoms they have. Remember, from other topics here in this forum, we know that Lyme / Borrelia is called "the great new imitator"; syphilis was called 'the great imitator' because so many different symptoms could be caused in different people by the bacteria, which is very similar to borrelia. (We have topics which help YOUsers understand all that history and background on other topics, so please continue learning here beyond this topic if you wish.)

As I often do in order to show people why I'm recommending a journey on links away from Lumigrate to investigate the information at a website, I provide what's at the link, or a portion of it, at Lumigrate. Here's an example of what you'll find at Lydia's organization's website, LymeAware dot org (except it looks really neat with the layout and font her website has so please go and see it there):

Testing & Forms of Lyme Disease [1]

Monday, 10 January 2011 00:00 | Written by Lydia Niederwerfer

Testing Procedures for Lyme Disease

The testing for Lyme Disease and other tick-borne diseases are not very reliable. I’d say you have a 50/50 chance that they could be correct or incorrect. This is a big problem to getting diagnosed quickly and correctly. The most recent (2012) new testing procedure by Advanced Labs [2] hopes to increase your chances of a correct diagnosis. You will see, in your research for answers, that prevention and early and proper treatment is your best defense against developing chronic Lyme Disease.

Most swear by Igenex [3] for testing but as most of you will find out, your insurance companies will not cover the costs so some of you will be relegated to use other labs. Dr. Burrascano does a nice overview on what a doctor should look for if you need to go to other laboratories which I have found they most often used LabCorp. Other labs that some recommend are Fry, [4] Clongen [5] and Galaxy [6]; each, in my opinion, has their own specialties, it is really up to you to research and inform yourself as much as possible to find the best solution for you. You may also want to see an explanation of these tests and their downfalls by medical microbiologist Tom Grier. (Read explanation. [7])

You may also want to go to the Resources [8] tab to find other testing laboratories that are also available. There also some sources listed for assistance in testing and treatment if you are in need; I would suggest even if you have had the test done and your insurance company did not pay for it, drop them a letter and ask for an appeal, it can’t hurt, they may actually cover the cost.

ELISA (Enzyme Linked Immune Sera Assay):

ELISA is not sensitive enough to serve as an adequate screen It measures the formation of antibodies to being exposed to the Lyme disease bacteria (Bb.). Many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. (You have a 50/50 chance of it being accurate)

Western Blot:

Western Blots (IgM and IgG) This test , especially in late disease, will not differentiate early from late stage disease but it will it does, however, propose an active infection.

“Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic.”

PCR (polymerase chain reaction):

PCR tests. The polymerase chain reaction test is a test that can search for a specific sequence of DNA. This is more sensitive but with Lyme Disease the bacteria Bb. has various forms and sub-species. This makes detecting the specific proteins or DNA sequences very difficult. (NOTE: The patient should be antibiotic free for at least six weeks before testing for best results.)

Dr. Burrascano's treatment guidelines and overview cover these tests and the treatments used combat the different forms of Lyme bacteria and other coinfections. See guidelines. [9]

The Three Forms of Lyme Bacteria (Bb.)

Borrelia Burgdorferi (Bb.) is the bacteria that causes Lyme Disease.

Spirochete – This is the active form, which its spiral like shape can penetrate tissue, organs, and bone. This is the form that usually is present at the beginning of infection. It quickly adapts upon antibiotic treatment turning into the other two forms when feeling threatened by antibiotic treatment.

L-form or Cell Wall Deficient –This form doesn’t have a cell wall which makes it difficult for your body’s immune system to recognize to fight. It is less mobile and more difficult to kill than the spirochete form. It usually causes the worsening of your symptoms.

Cyst form – is the dormant form of the bacteria and isn’t actively mobile. Since it’s dormant, you will not experience symptoms. It can also survive conventional antibiotic treatment as well as starvation, freezing, heat, oxygen, hydrogen peroxide; and other means. When it feels conditions are right for the bacteria to survive, it will change to one of the other forms. This is usually the reason most people relapse because these forms weren’t killed off during their treatment.

A great overview of the three forms of Lyme bacteria can be found at the following sites:

The Three forms of Lyme Bacteria [10]
New Lyme Disease Culture Test Could be Game Changer [11]
LymeBook.com
[10]Pictures of the different forms [12]

You may also want to read the following blogs:

What I Wish My PCP Knew [13]
The Stages Of Lyme Disease And Symptoms [14]
[15]

Dr Horowitz' questionnaire about Lyme (and etcetera -- other factors') symptoms is a resource that I'd want EVERYONE to know about. (It's also included at LymeAware dot org, Lydia said when we were commenting on something on my wall on Facebook as a FB friend had said he'd moved back north after 'retiring' to Florida, and he'd had lower body pains and suspected he got something from all the mosquitos. So I tagged her in and she gave him some good advise -- his response was he'd go ask for a test. We said 'oh, you'll do best to learn about that BEFORE you go...'). And I felt it was best to create a separate topic on Lumigrate about figuring out if you have Lyme / Borrelia or not.

The previous version of this questionnaire was folded into the longer, comprehensive topic(s) about Lyme at Lumigrate. But so many people are wanting to see "off the bat" a self-test / questionnaire AND there is a 2014 version from Dr. Horowtiz; again, please see the other topics about Lyme in this forum, they'll link a lot of information together for YOU / our YOUsers. I hope to impress upon people that these types of health issues are very complicated, and you have to put in a LOT of time to learn about them in order to be an effective medical consumer and be able to have your highest level of health possible.

The other topics you'll find will include information about the reasons for the clinicians to often go by clinical symptoms and not laboratory results (you'll see info I weave in about Marty Ross, MD for instance). And in the forum about political activism, social media, etc., there is a topic about Lyme activists which spells out the history of the 'fight' about Lyme which will help people understand why there are so many people who have no idea they have Lyme as part of their bodily (and brain) dysfunctions. And the increasing coverage of it in the media, which in some cases is voluntary (perhaps because a new vaccine is doing well in trials and will need a market of people to receive it when it's available), and in other cases is from pressure (such as the New York Times, so that gives you a Search word at Lumigrate for finding that thread). Fall of 2014 was yielding a lot of protests with good results. The use of the creative arts in New York's protest made it particularly interesting from my standpoint and presumably translated into more people learning of it as a result.

The Questionnaire:

www.bottomlinepublications.com/downloads/Horowitz_MISIDSLymeQuestionnaire.pdf [16]

^ A pdf file...

This is what you will see at the link before the items of the questionaire begins (which are multiple pages)

Horowitz Lyme-MSIDS Questionnaire

The Horowitz Lyme-MSIDS Questionnaire is not intended to replace the advice of your own physician or other medical professional. You should consult a medical professional in matters relating to health, and individuals are solely responsible for their own health care decisions regardingthe use of this questionnaire. It is intended for informational purposes only and not for self-treatment or diagnosis.

And then it launches into a very long list of symptoms which you check off and score and figure out if you might be wanting to seek the advise of a qualified provider about Lyme / Borrelia and the co-infections covered at the questionnaire.

Live and learn. Learn and live better! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [17] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!