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My understanding of Lyme Literate labs like Igenix is they test more sensitively.
They look for a wider variety of proteins which point to an immune response to Borrelia. A lab like Quest takes a smattering of many many types of Borrelia and then tests for a generic number of proteins. Some labs specializing in tick born illnesses test protein response for each individual sub cateragory of Borrelia, "Borrelia burgdorferi" or also called "sensu stricto", next Borrelia garinii, Borrelaia afzelii,Borrelia japonica, Borrelia valaisiana, Borrelia lusitaniae,and Borrelia bissettii.

Of Borrelia Burgdorferi, there are at least 46 strains documented.

Now try to imagine that you are "lucky" enough to be infected with the most common type of Borrelia which is Burgdorferi on the East Coast. Each of the 46 strains will result in a different protein response. Now start adding some of the other strains.....the local lab can only look for so many. They can take a guess at the most common.

A lab called Immuno Science, a Lyme Literate lab can drill right down and tell you exactly which strain you have based on your protein repsonse because that is their business. They know what to look for. Labs cannot invent false bands because people pay more for the tests. The insurance companys do not want to be in a position where they are forced to pay more for thorough testing. This IS a specialty and very involved. .

A positive Western blot is determined by the number of bands the lab finds.
If Igenix tests for a wider variety of legitimate bands, then your odds of having that fifth band appear is much greater. Not because there is foul play, but because the lab is drilling down further.

As far as treatment. A patient should be treated several months after symptoms are in remission and pulsed afterwards. There are different types of meds to consider based on cystic forms, cell walls and bacteria free of cell walls. Making a decision to stop treatment should not be considered until months after symptoms have ceased. This, I think is the difference between a Lyme Literate doc and a typical doc. There is no standard protocol. Everyone reacts differently, everyone has different strains, every strain responds differently to different meds...every person’s tissue toxin level is more or less based on the amount of time they have had the disease. Also most docs I've seen have no idea what a co infection is, not to mention you as the patient educating them to ask them to be tested for Babesia or Ehrlichia. And if they lack that info, why would they bother to check for it and if they do, what are the chances they are going to use a lab who uses more sensitive testing.

It's important to remember to ask yourself, what does the medical community stand to gain by researching this illness . I'm not saying anyone is deliberately out to get us and being malicious, but money is the number one motivator. The money is in treating illnesses over long courses of time insuring many years of security for the medical community and pharma companies. The money is in covering symptoms and not searching for the true cause. There are many indicators that suggest Borrelia is tied into MS, Parkinsons, Alzheimer’s, Lupus...they keep going on.

If we had a cure for Lyme, the doctors lose patients and the pharma companies would be in deep trouble It's easier to find a secondary symptom like scarring in the brain and diagnose MS and start them on meds. Parkinson’s, start them on meds.

Dr. Feder, the Dr. who is trying to send a message to the medical community that there is no clinical basis for chronic Lyme disease is going to make treatment in the coming years much more difficult unless something is done to expose this ugly untrue statement. Just by doing a little research I found he works with one of the largest pharma companies worldwide to testify on their behalf in court cases.

The cure for chronic Lyme is to reduce the tissue toxin load enough so the body can once again function uninterrupted. This means Lyme bacteria have to leave the tissues faster then they are being reproduced..and this can take years depending on the level of toxicity.

Another difference between a Lyme Literate doc and a regular practitioner is the Lyme Literate doc treats based on symptoms, not on test results. Lyme literate docs know the tests are not helpful in many cases because the immune system can be so compromised that there is no immune response to the bacteria. At least not the ones the lab is looking for. When a chronic Lyme sufferer reaches a certain point without treatment, the body is eventually going to stop making antibodies until the immune system has been restored first.

Two options necessary to move forward with the disease. A new "groundbreaking"enzyme restoration pill to restore the part of the immune system which is destroyed due to inflamation or develop foolproof antibody testing. But developing a fool proof antibody test for a disease that primary suppresses the immune systems response is irresponsible. It's like expecting a commercial jetliner to be reliable without regular maintainance.

We can't expect to test for a disease accurately when we do not have an "accurate" understanding of how the disease impacts the body.

There are docs that look at a CBC and say; "Hmmm...your white blood cell count is normal so your immune system is fine." That is like saying "You car has oil in the engine so it should be fine."
If the body has no enzymes, it cannot break down nutrients and dies. If we have a pathogen that destroys enzymes, you bet your immune system is going to shut down. You digestive system makes up most of the immune system and yet that is not a factor which is taken into consideration.

And while I'm venting, this doctor out of Lyme CT back in the early 80s....naming an illness that he recognized in a confined area in Lyme, CT "Lyme Disease." We are talking about Borrelia...We should not be referring to this disease as "Lyme Disease" now that we have identified the cause of the disease. "Borrelia Encephalitis" Borrelia Arthritis" Borrelia Meningitis" Borrelia Bells Palsy." Or better yet -

"Neuroborrelios "Inflammation or disease caused by infection of the central nervous system by a member of the genus Borrelia. It is frequently a late stage in the disease process, particularly in immunosuppressed individuals."

When we show ignorance for the true name of a disease, how can we expect the medical community to resolve an issue they have even been unable to refer to properly.

Borrelia has been around for millions of years and the medical community is acting like it just popped up out of the sky twenty years ago.

William Burgdorferi spent a decade working on a bioterrorism studying Borrelia. Many years later he was involved in "identifying the specific strain now named after him "Borrelia Burgdorferi."
It's no secret bioterrorist testing was being done in the Long Island area just prior to the breakout in Lyme CT.
The United States government is currently spending millions of dollars to study and develop Borrelia as a Bioweapon and yet we have little to no funding from the government to find a cure for this illness.

I find this to be all very suspect.

With regard to "controversy" I really don't think the usage of the word is appropriate, but I would settle for "Ignorance."

"And thats all I have to say about that."

-Quote from the movie "Forrest Gump."

Hi 1Q- i do not have all the knowledge of people like it'smylife but I will say that I found a HUGE difference between the 'usual' docs and the LLMD. I wrote a paper to help others understand what I wish they had looked for. I agree with others- the difference for me is in the treatment. But if a doc cannot recognize the illness, they cannot even begin to treat! Here it is.

What I wish my doctors knew about Persistent Lyme Disease

The intent of this paper is not to complain about the medical professionals who have sincerely applied their efforts on my behalf. I have done many hours of layman’s research on Lyme and have found that Lyme Disease is a very misunderstood and controversial disease. It is now obvious that I have experienced medical professionals who do not believe Persistent Lyme Disease(LD) exists and some who are open to the idea but are unaware of what it can look like. “Hindsight is 20-20”. My intent is to let medical professionals know what clues were present during my diagnostic process that should point them in the LD direction for others with similar presentations. Lyme patient boards on the internet are overflowing with pleas for better understanding in the healthcare community about this disease. This is my small effort to help.

LD is called ‘the great imitator’. It has many faces and has been mistaken for CFS, Fibromyalgia, MS, serious psychological diseases and more. It is a complex, multi symptom disease that can (and does) affect every part of the body. The symptoms I have are common and indicative but there are many symptoms of LD that I do not have or developed later so my earlier doctors were not made aware of them. Lyme often comes with co-infections that present a different appearance. LD affected me mostly and firstly in my neural system rather than my joints, which is a more commonly recognized LD symptom.

It is most like MS but….

MS seemed to be the first disease my doctors thought of. In addition to clean MRI’s, I was told that my problems were “most like MS but not quite” and thus received a diagnosis of Conversion Disorder. Here are some quotes from my doctors about my symptoms that actually indicated LD.

“Your symptoms jump around too much to be MS” LD symptoms DO jump around a lot.
“Your symptoms do not peak in the afternoon which is usual in MS” It is common for LD symptoms to be at their worst in bed late at night and in the am.
“People with MS cannot target the day they became ill” No, but people with LD can. It is common to hit hard and suddenly.
“Your symptoms should not be presenting in every area of your body “ Unlike MS which generally affects specific locations were the Myelin has been compromised, LD affects the entire body.

It all adds up…..

Taken separately, the symptoms and factors below may be indicative of nothing or indicative of a different problem. However, taken together, they paint a picture of LD. These items were dismissed or not asked about except by my LLMD.
• I belong to the Audobon Society and live next to a field on a wooded lot.
• 3 other members of my family have presented with the classic ‘Bullseye’ rash and have been treated for Lyme.
• My symptoms started 1 month after I stopped taking antibiotics for 9 years for acne.
• My original ELISA was equivocal
Symptom Hints not recognized
• I went to a naturopath who identified a potential adrenal problem. My cortisol test resulted in very depressed numbers.
• Night sweats, overreaction to alcohol, total body engagement
• My symptoms would spike roughly every 4 weeks and then plateau at a new level. I told 2 of my doctors that I felt like I was being increasingly poisoned. The Bb reproduction cycle is 4 weeks.

Controversy surrounding Lyme tests
Again, quotes from my doctors that demonstrate common understanding about Lyme test results. I found extensive information on the web that indicates significant confusion and controversy on this. I focus on IgG.

“With the degree of your symptoms, your Lyme tests should be through the roof”
“It’s not Lyme, your western Blot is negative”

• No matter what is believed about persistent LD, it is agreed throughout the Lyme community, the government and in general medical circles that the current Lyme tests are far from 100% accurate. The CDC recognizes this but for some reason, doctors trust the tests.
• The longer a person has had Lyme, the more likely the IgG will be negative. In it’s non walled form, the Bb has ‘hidden’ itself inside normal cells and the immune system is not aware that it is there. In some cases, a negative Western Blot will turn positive during intensive LD antibiotic treatment.
• For some reason, people who have had prior antibiotic therapy (like mine for acne) that did not eradicate the Lyme are more likely to have false negative Western Blots.
• There is significant controversy as to which antibody bands indicate Lyme. LLMDs recognize a different band configuration than most labs do for a positive result.

Thank you for taking the time to read this information.

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