Very Basic Guide To Lyme Disease In The USA

Thread starter #1
This post represents the most recent updates on practical Lyme Disease testing as of September 2017. It is in overview form with a brief explanation of the ins and outs of Lyme disease in the United States. It probably is not applicable to other countries.


When to suspect Lyme disease.
Endocrine dysfunction is common in Lyme disease; often patients find low serum levels of hormones like Testosterone, Growth Hormone, Estradiol, Triiodothyronine, Cortisol and 25-Hydroxy Vitamin D. It’s fairly common that the first treatable symptoms people who have Lyme have are endocrine based.
Once hormone replacement begins it often does not have the effect on mood, energy and fatigue that normally happens in people who are hormone deficient. Secondarily, these replacement protocols become hard to manage, and weird symptoms and side effects crop up. People may find they need a lot more Cytomel than normal people on thyroid replacement to relieve symptoms. Vitamin D supplementation may make them ill or their serum levels of 25oh Vitamin D will not go up with supplementation.


Common Symptoms of Lyme disease
One main symptom of Lyme disease is fatigue and no energy. Another one is arthritis that migrates from one joint/limb to another often times coinciding with a lunar cycle. As stated before, endocrine dysfunction where hormone replacement therapy has no effect after 4 to 6 months. Insomnia that does not respond to common sleep meds. Muscle pain. Fatigue and energy levels improve with short term antibiotic therapy and return after antibiotic therapy is done. These are the basic symptoms, however there are many more.


How to test for Lyme disease.
The Centers for Disease Control has very stringent guidelines for testing and treating Lyme disease. Failing to comply with these guidelines in some states can put a health practitioner’s license in jeopardy. Therefore a two tired approach to testing needs to be used.

-Tier 1
Tier 1 is comprised of tests the CDC recognizes as criteria for diagnosis of Lyme disease. The most used one is the ELISA test with an Immunoblot. Another test is using PCR-DNA on spinal fluid, synovial fluid/tissue. Since it’s highly invasive to test CSF or synovial fluid/tissue it is almost never done unless a lumbar puncture or joint arthroscopy is done for another more medically significant reason, such as meningitis or for ligament damage. PCR-DNA tests of blood are not acceptable for Lyme diagnosis accordingly to the CDC. The CDC compliant ELISA/Immunoblot is available from almost every commercial laboratory.
-Tier 2
Tier 2 is comprised of tests that the CDC does not recognize as criteria for diagnosis and/or treatment. Consequently most insurance will not cover treatment for Lyme based on the results of these tests. Insurance will most likely not reimburse you or cover the cost of these tests. They are considered experimental or investigative by the CDC. Most doctors will not treat based on the results of Tier 2 tests. In some states legislatures have forbid medical boards from investigating and disciplining doctors for using Tier 2 tests to diagnose and treat Lyme. Medicaid may reimburse some of these tests.


Igenex Western Blot(IGG/IGM) with IFA(Lyme Panel #1)approx $250.
The only panel that uses two different strains of Borrelia Burgdorferi(297 and B31) for testing. All the ILADS trained physicians use this test to diagnose Lyme. It is considered the gold standard in Lyme testing. This test requires a doctors order. Results take about 3 weeks. To order this test you must contact Igenex and they will mail you a test kit to be filled out by a physician. It would be helpful to ask your physician if they would sign the paperwork before ordering the test.


DNA Conexxions Lyme Disease Test. $25 deposit $500 for the test.
A urine test using PCR-DNA to determine Lyme and common co-infections often present in ticks. This test represents the best value for Lyme and co-infections testing. It does not need a doctor’s order or signature. Test results take about 3 weeks. Expedited results option for an extra $150. To order this test contact DNA Conexxions and they will mail you a kit with instructions after you pay the deposit. The test sample is best given right after a full body deep tissue massage.


Advanced Laboratory Services Borrelia Culture Test. $600.
This is a test that cultures samples of blood and will grow any spirochete or Borrelia present in the blood. Sometimes lab results can take up to 4 months. Probably the most specific and accurate of Lyme testing. This test requires a doctors signature. Upon positive test result you will receive a certificate and photos of the spirochete. To order this test you must contact ALS and have them send a test kit to a physician.

I think I might have Lyme what do I do next.
You should do two tiers of testing. Order the Tier 1 ELISA/Immunoblot from a commercial lab, and a Tier 2 test of your choosing. The easiest way to get the Tier 1 test is from Privatemdlabs, a Labcorp reseller, for $90. If you have a great relationship with a primary care physician you could ask them if they would test you using both tiers. They would order the ELISA/Immunoblot, and fill out the requisition paperwork for the Igenex Lyme Panel #1, or Advanced Laboratory Services Borrelia Culture. Or you could order the DNA Connexions Lyme Disease Test on your own.

My doctor would not agree to do the requisition for the Igenex Lyme Panel #1.

IF you still want to do this test you have a few options. You could contact Igenex or Advanced Labroratory Services and ask them to find a provider in your area that will order the test. You can goto Truehealthlabs and order the Igenex Lyme Panel and have it drawn at any Anylabtestnow. The downside to this is the hassle, and the extra cost, they mark it up an additional $150 plus ALTN will charge a fee. You can contact ILADS for a physician referral. The upside to making an appointment to an ILADS physician is you will be properly evaluated for Lyme disease and co-infections. They will work to help get you the right treatment. The downside to this is cost. ILADS physicians don’t normally accept insurance. The initial appointment is around $600 and takes 2-3 hours.


Provocation.
There are things a person can do to provoke the Lyme to make testing for it easier. This includes soaking in a hot tub, taking a long hot shower, being active, and a full body massage. Most blood draws for Lyme happen after patients have been sitting for an hour or more. It is thought that this makes the Lyme harder to test for. When a person gets a full body massage and does a blood draw or provides a urine sample right after provocation the tests tend to come back with stronger results.

The results.
Often people are negative using Tier 1 testing. It would be rare to be CDC positive. Some people have a positive ELISA but not enough bands present on the Immunoblot to meet the strict CDC criteria. If you are CDC positive using the Tier 1 test most likely your doctor will order another test. They might say the test is a false positive because you never were bitten by a tick, and did not have an Erythema Migrans rash. They might refer you to an Infectious Disease doctor, who will order more tests. They might also prescribe you 10 days of Doxycycline.

My Tier 2 test came back positive or suggestive and my Tier 1 test came back negative.
This is usually what will happen. According to the CDC and most state health agencies you do not have Lyme in this scenario. Insurance will likely not pay for treatment depending on your insurance and where you live. This is when you need to reach out to ILADS and ask for a physician referral. They will evaluate your symptoms and labwork and make a clinical diagnosis based on symptoms and will try to treat you. There really is no state that is Lyme friendly some just turn a blind eye to doctors that treat it. It’s common for Lyme patients to travel long distances and spend a lot of money for “proper” treatment.

I found a tick on me what should I do?

Take a picture of the tick that is on you or engorged in you. Get a fine edged tweezers and remove the tick by carefully grabbing the head and unscrewing it while you extract the head in one motion. Place the tick in a small zip lok freezer bag and place some grass in the bag. Using a sharpie label the time and date you extracted it. Contact tickreport's website and have it tested. Having a tick tested in a laboratory is the ONLY way to know exactly what microorganisms were inside the tick and potentially can help you get treatment and coverage. You have to document this. Most of the time nothing will come from the tick bite. However it’s better to be prepared. Testing of ticks is not done frequently enough so there isn't much data on which regions have ticks with more than one microorganism. So while you only need the $50 dollar test from tickreport, if you can afford $200 for all the screenings you should do it in the name of science. Insurance may reimburse you, so might the state health department. Go to the doctor. Show him the picture of the engorged tick, show them the picture of the zip lok bag you sent to tickreport, and ask them for 30 days of Doxycycline as a preventative treatment. If they won’t then contact ILADS for a physician reference.


This is a very basic guide Lyme disease, and only briefly covers co-infections. Ive discussed the political nature of the diagnosis and how to seek treatment. For additional information on Lyme disease and co-infections get Dr Richard Horowitz's book, “How Can I Get Better”. Most Barnes and Nobles has it on their shelf for around $15. Finally, there are a lot of scammers out there in the Lymeosphere. Lyme sufferers tend to be very resourceful people and these scammers take advantage of them. So if something sounds too good to be true it probably is. As of right now there is not a consistent reliable cure for disseminated Lyme disease.
 
#4
CDC guidelines are C**P..... If someone ever comes back positive based on CDC Guidelines, then they are SICK, SICK, SICK and most likely not even able to get out of bed. If you think you may have lyme don't even screw with your DR just order your own western blot test. I have found the WALKINLABS.COM western blot test is very reasonable in cost. Don't think that all DRs know what they are doing and when your PC tells you that there is NO way you could have lyme because there is no lyme where you live .... Read this articles below... BTW last I knew the CDC said IF you had Lyme it could be cured in 30 or 45 day treatment of antibiotics... BULLL...
http://nymag.com/scienceofus/2015/06/what-its-like-to-have-severe-lyme-disease.html
and for those of us that know who Khris Kristofferson is .... read this....
https://www.lymedisease.org/members/lyme-times/2016-fall-news/kris-kristofferson-lyme-disease/
and
http://www.rollingstone.com/culture...e-inside-americas-mysterious-epidemic-w487776

Lyme can mimic a LOT of conditions like ALS, Alzheimer's, CFS and sooooooooooo many more conditions that it often goes undiagnosed for years....
Most states will have Lyme FB education and support groups. Search LYME in your FB account for the state you are in and follow a few to keep up with the latest news and research.
https://www.facebook.com/GlobalLymeAlliance/

Now if you or a loved one is diagnosed with Lyme your next battle will be to find a DR that understands what Lyme is and how to treat it.
Soooo the CDC says it can be cured in 30 to 45 days of treatment with antibiotics and you or your loved one are still sick as dying dogs, your insurance will most likely bail as it is quite clear that you do not have Lyme...... They don't know what you have, but it aint Lyme so they stop coverage... Now your fun starts....

So now you are trying to find a DR that understands Lyme and is not a scum sucking lying money hungry SOB.... Good luck...... You end up spending $1,000.00's going from one quack to another quack.... A lot of the quacks want large chunk of $$$$$$$ upfront before whey will even attempt to treat you.... Some quacks will tell you that supplements will treat it and they sell you the supplements or their cure is not guarantied... See where this goes.....

I speak from a position of knowledge on this subject as my Daughter came down with Lyme a few years ago.
She lives in Atlanta and we have no idea when she got bit. She NEVER had the tell tail bulls eye rash (BTW large number of people that get bit do not develop a bulls eye rash). She would not listen to Dad and got sicker and sicker and was unable to work and was barely able to get out of bed and shower. I had get the western blot test and she was positive on 2 bands, as I recall The 2 bands would not have flagged a positive based on the CDC guidelines. She would have had to have 2 or 3 more bands positive to meet CDC guidelines, BUT she had Lyme.....

I was able to find a DR in Mobile Alabama that understood Lyme and we got her down to see him. Showed him the labs and he said "Yep you got Lyme..."
After one year on antibiotics the Lyme was gone, but the effects were still there. Dr said it could be one to 2 years before the body fully recover from the Lyme infection. She was able to start working again part time after a few months on the antibiotics and slowly worked back to full time.

Today she still gets tired easily and still is not any where near where she was prior to the Lyme, BUT still getting better slowly.

Long post BUT everyone needs to understand what Lyme is, what it can mimic and how to deal with it. If caught soon after a bite it can be treated awith good results BUT if left untreated ..... I can tell you about that...... As can the DR in the article above and Khris Kristofferson... And soooo many more people.

Educate your self and learn.....
 
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#5
A number of interesting links to some current research and talks.
Read a few.
If you don't think you have Lyme where you live you are wrong.
How about..." Sudden-onset dementia should really be a red flag for #Lyme, especially in people with compromised immune systems."
OR
"3-week-old infant is diagnosed with #Babesia. While pregnant, the mother was unknowingly infected and passed it on to her unborn son. "
OR
"CDC Reports — 2,600% Increase in Tickborne Babesiosis Infections in Wisconsin in 12 Years."
Read and educate yourself....
https://www.facebook.com/georgialym...if_t=notify_me_page&notif_id=1504843329254406
 
Thread starter #6
Babesia is a big problem. Its in the blood supply. About 4 out of 100 pints induce parasitema in blood inoculated hamsters. Meaning if you take a syringe and draw up some blood and inject it into a hamster the hamster will test positive for babesia, either using a giemsa stain, a pcr-dna test, or antibody serology.

Congenital transmission of Lyme and Co-infections is a very sensitive subject. Mainstream medicine is 50 years behind understanding which pathogens are transferred congenitally. Testing is still not sensitive and specific enough. The CDC is doing everything it can to slow down the development of drugs that will work better for tick bourne infections, and better testing for it.
 

Nelson Vergel

Founder, ExcelMale.com
#12
https://www.labcorp.com/test-menu/30711/lyme-disease-western-blot

Western Blot is first step.
CDC says to do the Enzyme-linked immunosorbent assay (ELISA) test first, but a lot of false negatives.
So just skip and do Western Blot from the start.
https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651
LABCORP TO DENY PHYSICIANS ACCESS TO WESTERN BLOT TESTS FOR LYME DISEASELabcorp will not offer a western blot test for individuals unless they are positive or equivocal for the Enzyme Immunoassay (EIA) or Immunoflorescense (IFA) screening tests for Lyme disease as of August 11, 2014.[1]
 
#13
https://www.labcorp.com/test-menu/30711/lyme-disease-western-blot

Western Blot is first step.
CDC says to do the Enzyme-linked immunosorbent assay (ELISA) test first, but a lot of false negatives.
So just skip and do Western Blot from the start.
https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651
The ELISA test only works if you your infection is within 3 weeks old. The problem is it takes about 3 weeks to start getting symptoms and then it's too late to use the ELISA test. Also it's the one Lyme test that is cheapest and is offered by any hospital or lab. I had lyme disease and my MD's ran that stupid test for years while I suffered and I got no where. I had that special rash with the tick stuck in it and they still wouldn't believe I had lyme. I finally had to go to the USA and make an appointment with a Lyme Literate MD to get diagnosed properly. The MD diagnosed me positive by the western blot and clinically by the fact I had the rash and also clinically by the description of the symptoms. She had a good idea what my co-infections were before the labs were ready.

It took a little over a year of being on 5 different antibiotics before I was rid of all my symptoms. I'm perfectly normal now but my PCP still claims it was all in my head... most unbelievable. The most interesting part about the CDC is they got caught being paid off by big pharma and they all got fired and taken to court. The court docs are online about this. They controlled the protocol of how lyme should be treated and the MD's who knew how to treat it effectively because of evidenced based medicine were being taken to court because they weren't following the CDC protocol. These MD's were losing their license's so the CDC could buy themselves more time to develop a vaccine with big pharma who was paying them off. Complete and total corruption within the CDC delayed effective lyme treatment for many years. A sad story for sure.
 
#17
I was following that years ago for my Lyme but one of the down sides of DMSO is that it causes your body to stink. I mean it's really bad, you smell like a decomposing body. I had been taking it for not even 3 days when that side occurred so I had no choice but to stop. The problem was that I was at a party and my wife told me it was so bad that I had better say something. So I had to tell our hosts that I had just started a special med and explained the smell part... not the best thing to happen to someone.

Also you can rub it on sore parts of your body as a topical and it does remove pain quickly. It's real interesting. Horse trainers have buckets of it and they submerge the leg of the horse into it after racing if they have problems. This is it's most common use in north america.
 
#19
Utilize a conventional drinking straw and place it at a 45° edge over the tick - the straw is just being utilized as a manual for coordinate the bunch. Take a length of string and tie a free bunch at the best or midriff of the straw.
 
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