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LYME Frequently Asked Questions

Who gets Lyme Disease?

Anyone can get Lyme Disease. It is almost everywhere in the world and it is suspected that even a mosquito bite can transmit Lyme Disease. The mosquito bite vector of transmission has not been proven. It is generally believed that ticks are the main vector for infecting humans, and ticks make their way into human areas by catching a ride on rodents or family pets.

Unlike common bug bites, ticks have a way to bite you so that you don't feel it and it can stay attached to you for hours without you realizing it. The goal of the tick is to drink your blood and when it does so, an infected tick is able to pass dangerous bacteria into your bloodstream, including Borrelia burgdorferi which causes Lyme Disease.

Some people who get infected through a tick bite get a bullseye rash, but some do not. If you are 'lucky' to see a bullseye it is 100% confirmation that you have acquired a Lyme Disease related infection (Lyme, STARI, etc.).

The most prevalent areas for Lyme in North America are on the east coast of the United States and Canada, especially Pennsylvania, Vermont, New Hampshire, Maine, New York countryside, Connecticut, Massachusetts, Maryland, New Jersey, Delaware, Rhode Island, West Virginia and Virginia and around the Great Lakes, including Minnesota, Wisconsin, Michigan, Ohio, Indiana, Illinois Iowa. In Canada, it is found in primarily in Nova Scotia (highest at 12 times national average), Ontario, Quebec, Manitoba and New Brunswick.

However, those are just hotbeds. It is found nearly everywhere. See Where is Lyme? (page coming soon) for a more complete description of all infested areas, including outside North America.

What are the symptoms of Lyme Disease?

The reason this is hard to answer is because almost any symptom you could name can be connected with Lyme. In general, Lyme is misdiagnosed as Flu or Viral illness (most common at the onset of infection), Menopausal Symptoms or PMDD, MS (Multiple Sclerosis), CFS (Chronic Fatigue Syndrome), FM (Fibromyalgia), Depression or "Psychiatric Disorder", IBS (Irritable Bowel Syndrome), Rheumatoid Arthritis, Adrenal Fatigue, and Thyroid or Autoimmune disorders. Some evidence suggests that in some area 70% of the time Alzheimer's (bacterial plaques in the brain) is caused by the Lyme Disease spirochete.

The main symptoms are feeling exhausted all the time, having little or no energy, brain fog, can't focus, high anxiety out of no where (may be due to blood sugar issues caused by lyme), panic attacks, old injuries acting up, emotions get out control every month (related to menstral cycle), stress amplifying symptoms, terrible sleep, waking up before you should (mind is always racing and cortisol is high), body aches or stiffness, joint pain, muscles seizing up, horrible pain in the head or migraines (thought to be due to muscles pinching nerves), increased sugar cravings, being cold a lot, EMF sensitivity, noise and light sensitivity, and vertigo.

There are many more symptoms that have been connected to Lyme infections. Part of the reason there are so many is because Lyme so often occurs alongside different co-infections (Anaplasmosis, Mycoplasma, Bartonella, Babesia, Powassan virus, etc.). Some of the above symptoms might be strongly connected to co-infections and not Lyme itself, which can be challenging to sort out.

Another thing Lyme does is 'disable' the immune system in certain ways allowing dormant infections to resurface. So if you had EBV, that could become chronic (causing neverending fatigue). If you had herpes, that could come out.

To some degree infections will go dormant over time, but fighting lyme can cause other things to resurface, so it is always best to be ready for that fight and see it through to completion.

Can Lyme Disease be diagnosed from symptoms alone?

Given that the state of testing for Lyme is so poor, it will definitely make sense many times to diagnose from symptoms alone. Especially if a person has suffered for many years, it does no harm to see if a safe lyme treatment brings relief. If it does, it would be a strong indicator that they did have lyme, and at the same time the treatment could heal them or point the way for additional treatment.

Why is Lyme hard to test for?

The Western Blot for Lyme Disease is an antibody test. It is one of the more common tests given for Lyme Disease and supposedly finds lyme 47% of the time when it is present. That means even if you have Lyme, you will still more likely than not test negative.

It is also true if you don't have the exact species Borrelia burgdorferi you are even less likely to test positive. There are major downfalls with an indirect test such as this. Even in the best of circumstances you can test negative when you are actually positive.

Also, two important lyme specific bands aren't even used in this test (bands 31 & 34). This is why many people say to use IGeneX for Lyme testing because they include these bands. However, even with these bands it can make no difference.

A treatment clinic in Arizona which actually works with Lyme sufferers all the time told us what has been working best at their clinic. That is a Urine PCR test in combination with biofilm busting. This means that first you do something that helps bust up the biofilms, such as a deep tissue massage. Then the body concentrates stuff in the urine, and then test that urine.

This will give you the best way of seeing what you have and it is specific, and so that helps you get the best treatment plan to deal with everything together.

What is the standard treatment for Lyme Disease?

It is important to understand that there are two standards of care for Lyme Disease. If you go to a typical doctor you will most likely be given the IDSA standard, which is from the Infectious Diseases Society of America. This is widely considered an out-dated standard, but it is still being used.

With this standard you are tested for Lyme Disease, and if you test postive you are given antibiotics for 2 - 4 weeks (usually less than 3 weeks) and that is usually all. If you still have symptoms after this time (or even if you report that you were getting better on antibiotics but things started going downhill again after you stopped them), you will be told you have "post lyme" syndrome, which places you in a category like you aren't still in need of treatment for Lyme Disease (even if you are).

The other standard of care is from ILADS (International Lyme and Associated Diseases Society). There are two main differences in the ILADS standard of care. The first is that there is a more understanding approach to who should be treated in the first place. If Lyme is judged to be probable based on the symptoms and circumstances, treatment will proceed even without positive test results.

Then, after a more standard period of antibiotic use of 20 days, a reassessment is made and antibiotic therapy is extended if deemed appropriate, for a total of 4-6 weeks. Possibly in some situations an even longer period is agreed in cases of chronic lyme, although this is not discussed in their treatment guidelines.

The CDC cautions that because testing is not likely to be positive until 4 to 6 weeks after infection, doctors who suspect Lyme based on symptoms should prescribe antibiotics even if the test is negative.

Why is 4 weeks of Antibiotics not enough?

The reason 4 weeks of antibiotics is not enough is because 4 weeks is a common replication time for the lyme spirochete. With countless other bacteria even a couple of days of antibiotics would be "equivalently greater" because their replication time is a matter of hours. But with lyme it can replicate in 7 days or more commonly 28 days, so you would need to take antibiotics for 30 weeks to have a remotely equivalent treatment.

Read this article to get a more detailed understand of this principle.

Is there a better treatment for Lyme Disease?

Yes, there are clinics that use superior testing strategies to more likely figure out what you have specifically. Then they create a customized approach to treatment, which is more complete and addresses possible fungal sensitivities, vitamin and mineral deficiencies, gut issues, and more. In place of antibiotics, more powerful herbal formulas may be used if an all-natural approach is required.

Unfortunately, even though the clinics are board certified, insurance companies don't cover the care provided through them, so those without funds to cover treatment through them cannot get care without the financial help from someone.

It is a very corrupt situation that exists in health insurance coverage around certain diseases including Lyme Disease.

There are also new therapies which are not even necessarily legal to offer in the United States, and this has some people paying several thousand dollars and flying to other countries in seek of them.

A search on ILADS.org turns up nothing at all for "hyperthermia". Despite all that ILADS is doing to promote a better standard of care for Lyme sufferers, it seems that they are overlooking superior therapies that have been advanced more recently.

Hyperthermia has been shown to greatly increase the effectiveness of antibiotics. Doing both together, it has a much higher cure rate than antibiotics alone. Furthermore, studies have shown that stevia leaf extract is effective at destroying spirochetes in phases that antibiotics don't touch. "Stevia" also turns up no results on ILADS.org.

Moreover, the best Lyme treatments address biofilms, something not mentioned on the ILADS treatment guidelines.

For more information about Lyme treatment options, see this page.

Why is breaking up biofilms important and how do you do it?

Biofilms are communities of spirochetes that work together to create a sludge that they live inside. This sludge is difficult to penetrate and makes it harder for the body or medicines to kill the spirochetes.

Deep massage is essential to really help break up biofilms. However, this should be done in addition to taking certain supplements that also greatly help break up biofilms in the body, most notably NAC.

What is Herxing?

Short for Jarisch-Herxheimer, it is a reaction characterized by feeling worse before you feel better. When you fight a pathogen in the body, it can fight back and create toxins in an effort to make you stop what you are doing.

What are all the ways to catch Lyme Disease?

Lyme is an infectous disease so that means you can catch it from contact with the bodily fluids of someone who is infected. This includes sexual transmission, which has been proven but it is not known if it is commonly spread that way. Sexual transmission has been suspected for those who don't remember any bug bite.

It is also possible for a baby to be born with lyme because the mother passed it to the infant in the womb or through breast milk. For the many people who have struggled with symptoms since childhood, they might have been born with it. Moments of great stress in life are often a trigger for Lyme to manifest and symptoms to come forward.

It is also possible that a bug bite was simply overlooked somehow. Lyme is often aquired from the bite of a tick. A tick may fall off in the shower and you never knew you were bitten.

It is said that the tick must remain on the person for 24 hours in order to cause infection, but in actuality it can happen in 7 hours, and maybe even less time. That means going to sleep with one on you is all it takes.

What are ways to reduce the spread of Lyme Disease?

There are many ways, but it is important to spread awareness. Many people have no idea the danger that lurks in their environment. People may think it is perfectly okay for children to play in a pile of leaves or something else that seems innocent.

They don't realize that ticks can be extremely small sometimes and very easy to overlook on the body.

They don't think that a pet may bring one into their home. They don't realize that rodents carry them, not just deer, and rodents might be spreading them into their yard. Keeping rodent population down will help.

There are many ways to help reduce Lyme Disease infections from happening in the first place, and we are currently working on a page with more recommendations.

PostLyme Club and Documentary © 2019 Terrabithian Productions and published by I Choose People.