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Lyme Disease: A Basic Education
By Matthew Goss
Published by Lymebook.com

I've put this page together mostly to organize my own thoughts and research. If it can help you learn about and understand the disease too, then it can serve a dual purpose. What I've tried to do is translate all of the jargon and facts into a useful layman's guide to the disease and treatment.

It is not meant to be an authoritative article, and by no means is it meant to provide any medical advice or diagnosis, or to suggest or recommend treatment procedures or drug dosages. What it is meant to do is give an overview of how the disease works and how it is treated. Breaking it down like this has really helped make this disease less frightening for me, and I hope it can do the same for you.

I'm going to start by describing how I got the disease, and how I came to realize I had it. This may help others recognize the symptoms, which I will go into in greater detail on later.

How I got it

From February 28th until June 21st of 2002, I hiked nearly a thousand miles through the Appalachian mountains from Georgia to Virginia.

I didn't hear a whole lot about Lyme Disease before I left for my hike. But I learned a little bit about it, and went fully armed with 10 days worth of tetracycline antibiotics, which I carried for nearly a thousand miles before I went home in good health. They were one of the few non-negotiable items in my pack.

I never used them...on the trail.

About 3 weeks after I got off the trail, I was back in Pennsylvania working on finding a job, relocating, living out of a suitcase, a million "other" things to do. I got a really bad sinus infection that turned into a fever, complete with chills, sweating, mild hallucinations and swollen glands. After my third straight day in bed I pulled the antibiotics out of the first aid kit in my pack and started taking them. A week later I was back to normal. Still had lots of "other" things to worry about. It went away, and since I was unemployed and didn't have health insurance, I didn't go to a doctor.

Fast forward 4 weeks...

I had just relocated to Nashville, started a new job, and was still trying to unpack and furnish my apartment. Still lots of "other" things to do to transition back to the "real" world.

I got a really sore throat that seemed to last forever, and got more and more painful as the days went by. I eventually lost my voice. My glands swelled up again. I started back on what I had left of the antibiotics, and the illness turned into a chest cold with a bad cough and then went away after about 2 weeks.

Two weeks later I was back where I started. Each time I got sick it seemed to get worse. And each time more and more symptoms showed up. I got a urinary tract infection that went away for a week and then came back for a week, back and forth, no getting rid of it, despite massive doses of antibiotics. I slept 10 to 12 hours a day. After taking enough antibiotics to kill a small mammal steady and hard for 3 weeks, I was still sick and tired.

Within a couple of weeks, I began experiencing what people with Lyme call "brain fog," which is a collection of symptoms that involve difficulty concentrating, short term memory problems, focusing, etc. At the same time I also began having trouble focusing my vision. It became a real effort to keep my eyes focused on what I was reading. You know how you feel when you haven't had any sleep for a couple of days and you just can't get your eyes to focus anymore? I started feeling like that for a couple of days at a time, even though I'd been sleeping 12 hours a day.

I also started experiencing muscle twitching all over my body, and some muscular aches and joint pains. My legs would feel like jello.

Next came the hearing sensitivity. I work on the phone all day, and I started having to turn the volume on my phone way down because background noises and high pitched voices really started to grate on my nerves.

And I noticed trouble thinking clearly, and became frustrated easily. I used to enjoy reading very much, and spent most of my free time doing that (at least 2 hours every day). But I found myself constantly having to re-read things and eventually gave up on it. Short term memory became a problem, and I would "zone out" easily. I forgot things as soon as I was told them, and had to ask people to repeat things often.

I started having trouble with simple math problems. Like a math computation which requires two or three steps of simple arithmetic, such as adding a couple of numbers and them multiplying that by another number, and then dividing by something else. I'd get to the second or third step and forget what I was trying to figure out, or what the next step was, and I'd have to start over. Usually by the third try I would actually get it.

Types of Ticks that Carry Disease

The funny thing is that I remember getting bitten by ticks. The first ones I saw on the trail were just outside of Atkins in some grassy fields on May 7th. But I thought that only the little tiny deer ticks would hurt you. Indeed, every other hiker that saw me pulling them off said "don't worry, those aren't the kind of ticks that carry Lyme Disease." And I didn't worry.

Well now I know better. There are at least 8 different kinds of ticks that carry tick-borne diseases. These types include ixodes scapularis (deer tick), ixodes pacificus (western black legged tick), ixodes dammini, ixodes angustus, amblyomma americanum (lone star tick), dermacentor variabilis (American dog tick, sometimes called the wood tick), rhipicephalus sanguineus latreille (brown dog tick), and ornithodoros hermsi.

There are lots of web sites on the internet perpetuating the myth that only deer ticks carry Lyme, but if you do enough searching you will also find evidence that many other types of ticks have been proven to carry Lyme and other diseases. I was infected by dermacentor variabilis (American dog tick, sometimes called the wood tick), which most people will tell you does not carry or transmit Lyme. The ticks that bit me were never attached for more than 2 hours, and they were not deeply embedded. Many people will tell you that a tick has to be attached for 24 to 48 hours to transmit Lyme. I know differently.

Put any one of the above 8 ticks names into a Yahoo search and read some of the scientific studies. Or go here for a listing of tick species and scientific studies on whether or not they can carry and transmit Lyme and/or other diseases. The links above are just a sampling of what I have found. They all carry disease, and if they bite you there is a chance they can transmit them (it has been suggested that Rocky Mountain Spotted fever can be transmitted just by touching a tick). Don't believe the mantra "its not a deer tick, don't worry."

Lyme Disease has been documented in 49 US states. Ticks are carried by migratory birds from as far north as Canada and as far south as South America.

And fewer than 50% of those infected with Lyme Disease get the characteristic "red spot" that is supposed to be the signal that you got the disease.

Two weeks after my first tick bite I noticed blood in my urine for about 3 days. In the next town I called a service called "Ask a Nurse" that answers medical questions, and the nice nurse told me that if it went away by the third day not to worry about it. I later learned that this is a symptom of Babesia, a parasitic disease similar to malaria which I will explain later. New studies are showing as many as 66% of those infected with Lyme also have Babesia.

Knowing what I know now, I would advise anyone who gets bitten by a tick, any tick, to begin taking 500mg of Doxycycline a day immediately. Most doctors do not know how to diagnose or treat Lyme Disease as they are going by outdated CDC guidelines that were developed only for surveillance purposes. The CDC now admits that these guidelines are insufficient.

Lyme Disease Books:

The Lyme Disease Solution	Lyme Disease and Rife Machines	The Top 10 Lyme Disease Treatments	The 2008 Lyme Disease Annual Report

If you get bit by a tick, get yourself to a Lyme Disease doctor who will prescribe these high doses of antibiotics immediately (further down the page I will tell you how to find one). If you don't follow this advice, you may never get rid of Lyme.

I've heard more than one person say they went from doctor to doctor for 3 years or more (some have been through more than 50 doctors) and were told different variations of "its all in your head."

Some people have been on heavy antibiotics for more than five years, with little improvement. Two to three years seems to be the normal span of time that people are treated by an experienced Lyme doctor, and many of these people relapse later and have to go through it all over again.

This is not something that can wait a month or even a couple of weeks. The greatest success in treating these tick-borne diseases comes from catching them early. Once these diseases have spread throughout your body you are talking years of heavy doses of medication, if you can be cured at all.

These are very serious diseases. Many people with Lyme Disease have mistakenly been diagnosed as having multiple sclerosis, Lou Gehrig's disease (ALS), lupus, and chronic fatigue syndrome.

If you, or anyone you know, believes they may have Lyme Disease, and your doctor diagnoses you with one of the above illnesses, get a second opinon from a doctor who specializes in the treatment of Lyme Disease. You see, there is little or nothing they can do for you if you have MS or Lou Gherig's disease or chronic fatigue syndrome. Nobody knows what causes these other diseases. Lyme Disease is treatable.

Above all, do not let your doctor treat you with steroids if you believe you may have Lyme. This will suppress your immune system and can cause irreparable damage to your central nervous system.

Lyme attacks your central nervous system, and causes paralysis, hearing loss and blindness in later stages. People are losing points off of their IQ (verified by tests) from the neurological effects of this disease. I was never a math whiz, but I could easily do algebra and geometry, and before I started treatment these things were a challenge.

Definitions and Terminology

The first thing I came across in learning about Lyme is all of the confusing terminology, and I have some medical training so I thought I would have that area covered. The thing that confused me more than anything is all of the different names for the same things, and all of the abbreviations people in the "Lyme world" use.

Lyme disease is also referred to as:

Lyme Borrelia

Borreliosis

Borrelia burgdorferi (Burgdorfer is the name of the doctor who identified the bug that causes the disease)

B. burgdorferi

Bb

Spirochetes (refers to a type of bacteria that is spiral shaped, of which Lyme is one)

Cysts, or cystic form of Lyme

See how confusing it can be if you have many people posting messages to a message board, all using different names for the same thing?

Well, to complicate matters more, there is also another disease called Babesia that many people who have Lyme also have, and it took me quite awhile to figure out that this was a separate thing, and what names it goes by. Babesia is also called Babesiosis, Piroplasmosis (piroplasms are a type of protozoan) and a shortened nickname is Babs. Although this is a separate bug altogether (a protozoan), many people who are infected with Lyme Disease also have a coinfection of Babesia.

A coinfection is another separate infection that co-exists along with Lyme. It is very common for ticks to carry more than one disease, and many people with Lyme have one or more coinfections of other diseases.

And another B word that can be confused with Lyme is Bartonella, which is another coinfection that is separate from Lyme. Bartonella is also known as "cat scratch fever."

A third common coinfection is Ehrlichiosis (also Ehrlichia).

There is also a lot of talk about Mycoplasmas. There are several different strains of this bacteria, and the gene sequence of one of them has been patented by the US Army. Mycoplasmas have been implicated as a possible cause or contributing factor in Gulf War Syndrome.

It is believed that there are many bacterial infections that are as yet still unidentified. Many people believe that the ticks that carry Lyme commonly carry multiple strains of many different bacteria, so if you are infected with Lyme then you likely have others as well, which can complicate treatment.

Recently, the American Lyme Disease Foundation reported that "with support from the ALDF's Research Program, recent studies at Yale's School of Epidemiology and Public Health revealed a new spirochete resembling B. miyamotoi, which causes relapsing fever in Japan. Further studies indicated that the spirochete is found in 10-20% of ticks studies in New York, Connecticut, Rhode Island and New Jersey, and if implicated in human disease, may help explain late-stage symptoms exhibited by some people. In addition, the research indicates there may be other undisclosed microbes lurking within Ixodes scapularis[deer tick]."

And contrary to popular belief, the "deer tick" is not the only tick that carries Lyme. Many different kinds of ticks do, and it is likely that most ticks carry some type of bacterial infection. It is known that the white-footed mouse carries Lyme, and is one source of tick infection. There is also speculation that these bacteria are also carried by fleas, mosquitos and other insects, although more research is needed in this area.

Symptoms and Tests

So how do you know if you have Lyme Disease? Or Babesia? Or Bartonella? Or Ehrlichia?

Those questions aren't as easy to answer as you might think. The tests for these diseases are not very accurate, so even a negative test does not rule out the possibility that you have them. For instance, there are at least 12 strains of Babesia, and tests are only available for two of them, so a negative test for Babesia really means nothing. The best test labs are Igenex and Bowen.

If you decide to be tested by Igenex, you should request tests 183, 188, 189, 200, and 203 initally. This will test you for Lyme Borrelia by both Western Blot and ELISA as well as Babesia and Ehrlichia. Current costs for these tests as of October 2002 will total $367 for all 5 tests if you pay up front--Igenex will not bill your insurance company.

To request these tests, print out this form at the Igenex web site and take it to your doctor (you can use your family doctor for this, but don't let them use their lab, make sure they use Igenex--its your money and you are paying for a service) and request that he or she draw a tube of blood and then spin it to separate the serum. Then send the serum by FedEx to Igenex.

If you have any questions about this you can call Igenex at the 800 number listed on their website. You can also call them ahead of time and have a test kit mailed out to you to take with you to your doctor's office.

You will see references to IgM and IgG in regards to these tests. These are types of antibodies that the tests will recognize in your blood serum. IgM measures initial immune response while IgG measures a later stage response.

The tests do not test for the bacteria themselves, only your immune response to them. So if you have Lyme and your immune system is weak due to other factors, your body may produce few or no antibodies, and thus test negative. Your body may also stop producing antibodies if you have taken antibiotics. Also, if you have just been bitten by a tick your body will not have had time to produce any antibodies.

If you have been tested, even if you are told your test is negative, ask to see the results and ask which bands, if any, showed up on the test. Your doctor will likely tell you that you tested negative even if your test shows that you have Lyme. The reason is that old CDC reporting guidelines state that you must have 5 bands to be positive. However, even one Lyme-specific band can prove you have Lyme.

If you want to know how to interpret these tests and what the different bands are, click here. I would also suggest you check here for additional information. For questions on what specific bands mean, the above two links often provide links to studies on them.

The short answer is that bands 14, 21, 22, 25, 28, 31, 34, 35, 37, 39, 47, 50, 83, 93 and 94 are specific to the Lyme spirochete, borrelia burgdorferi (Bb). The presence of bands 42 to 45 may indicate an Ehrlichia infection, click here for reference on this. There are other bands that may indicate a Bb infection, but because they could also be caused by other diseases they cannot be used as a screening tool, unless taken in context with other Bb specific bands.

If someone tells you that you need at least 3 or 5 of these bands to have Lyme, ask them why you would have any of these Lyme-specific bands if you had never had Lyme in your system. The 3 to 5 band criteria are based on outdated CDC guidelines, but many doctors who are not educated about the disease still use those outdated standards to make a diagnosis.

False positives come from non-specific bands that may resemble other diseases. Lyme-specific bands can only mean that Lyme antibodies were in the sample they tested. Ever hear of anyone who is sort of pregnant?

Bowen takes a different approach, and actually cultures (grows) the bacteria from your blood sample and photographs the bacteria themselves. They are a non-profit doing research and ask for a $215 tax deductible donation to conduct testing for Lyme, Babesia and Ehrlichia.

Your doctor can call Bowen and they will fax all of the necessary forms to your doctor's office.

Doctors who are experienced and knowledgeable in treating Lyme Disease (often referred to as Lyme Literate Medical Doctor or LLMD) do not base their diagnosis solely on the tests. In fact, these experienced Lyme doctors often make a diagnosis of Lyme Disease even in the face of negative tests. Their diagnosis is based on symptoms.

Disease	Symptoms
Lyme Borrelia	In only 50% of the cases, a characteristic rash called erythema migrans develops in the "bullseye" shape. Flu-like symptoms include headache, sore throat, stiff neck, fever, muscle aches, fatigue, muscle pain and arthritis. Neurological symptoms including meningitis, numbness, tingling, and burning sensations in the extremities, Bell's palsy (facial paralysis) and muscle twitching. Swollen glands are also common.
Babesia	Fever, chills and sweating, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness. Also dark urine or blood in your urine. This disease is very similar to malaria, and drugs used to treat malaria are also used to treat Babesia. Don't be fooled if your symptoms go away, they will come back every few weeks, and they will get worse each time they do.
Bartonella	Fever, chills, headache and severe pain in the tibia. Symptoms may reappear every 5 days. Many people are asymptomatic.
Ehrlichia	Fever, chills, headache and muscle pain, gastrointestinal symptoms.

As you can tell by the chart, symptoms for all four of these diseases are very similar, and this situation is further complicated by the fact that laboratory tests for these diseases are not very accurate. That is why many Lyme specialists treat for coinfections in order to be sure of eradicating the disease.

It is also important to realize that you may not have all of these symptoms, and that the ones you do have may be mild, or go away temporarily. Aside from blood in my urine for a couple of days, I didn't have any symptoms for about 2 months. Don't be fooled into thinking this will just go away. Early treatment is key.

And it is very important that you see a doctor that specializes in treating Lyme Disease. Your family doctor will be using outdated treatment protocols that do not effectively cure the disease. It has been proven again and again that 3 to 6 weeks of antibiotic therapy is not enough to cure this disease, especially when considering coinfections that prevent Lyme from even being targeted during initial treatments.

You must eliminate coinfections before you will do any good treating Lyme. You can find a Lyme Disease specialist (LLMD) by using the links at the bottom of this page. Specifically, go to Lymnet.org and go to the Flash Discussion message board for "Seeking a Doctor."

Drugs

Once I got the names down, drugs were the next thing. There are lots of them that are used to treat Lyme, Babesia, Bartonella and Ehrlichia. Some abbreviations commonly used are abx (means antibiotics), tx (treatment), and dx (diagnosis).

Treatment becomes complicated when there are coinfections, that is, if you have Lyme and another one or more of the other bacteria and protozoa such as Babesia or Ehrlichia. Often treatment of Lyme is more successful when coinfections are first eliminated.

One of the more common drugs used, at least in the beginning, is Doxycycline. Doxycycline is part of the tetracycline family of antibiotics, and is effective in treating Lyme and Ehrlichia in the early stages if taken in the proper doses.

Experienced Lyme doctors recommend taking doses of 400 to 600 milligrams per day, or as much as the patient can tolerate (some people who take "doxy," as it is known, get an upset stomach when they first start treatment, but your body will often adjust if you build up to the higher dose). The standard protocol used by mainstream medical doctors has been 200mg per day for 3 weeks, but experienced Lyme doctors have found this dose to be inadequate . The key is to take a bactericidal dose (a dose capable of killing bacteria) that is capable of crossing the blood brain barrier.

Your brain has tiny blood vessels (capillaries) that do not allow many larger moleculed drugs to pass through, leaving a hiding place for the disease away from the drugs that would kill them. If you take a drug that does not cross into the brain, then as soon as you stop taking the drug the bacteria will spread back to the rest of your body and you will be at square one.

Doxycycline is capable of crossing into the brain, and a dose of 500mg per day of Doxycycline is considered enough to be bactericidal. Any lesser dose is considered bacteristatic (bacteristatic means it can stop the bacteria from spreading but is ineffective at eradicating the disease).

Lyme disease is capable of forming a cyst around itself when it encounters a hostile environment, such as when you are on antibiotics. This cyst cannot be penetrated by your immune system and normal antibiotics, and these dormant bacteria can come back to life once you stop treatment.

The theory that has emerged over the past couple of years is that in order to successfully treat Lyme, you must first eliminate coinfections. Once you have eliminated coinfections you must attack Lyme from three different angles: in the blood stream, intracellular, and in its cyst form. This leaves the bacteria nowhere to hide.

Antibiotics from the tetracycline family, the penicillin family, and cephalasporin family are typically used in the blood stream. Macrolides such as Rulid (roxythromycin), Zithromax (azithromycin), and Biaxin (clarithromycin) are used intracellular. Flagyl (metronidazole), Fasigyn (tinidazole) and Plaquenil (chloroquine) are used to combat the cyst form.

An added benefit to combinations of drugs is that it prevents bacterial resistance from developing because they are simply overwhelmed by being attacked from all different angles.

Drug combinations are where the expertise of an LLMD comes in. Especially when treating coinfections whose treatments are not easily tolerated due to toxicity and side effects of the drugs, and when using some of the more toxic drugs that attack the cyst form of Lyme.

Often the dose of these drugs are built up over time, starting with a small dose and slowly increasing it. Other times they are rotated and changed so that your body can rest from the toxic effects of the drugs. Some doctors have developed protocals for these rotations and changes, and they know what works because they have the experience of all of their previous patients.

Common practice says that a patient should be 100% symptom free for two months before stopping antibiotic treatment. If you still have symptoms, you are not cured.

The following table is a list of drugs that are commonly used to treat Lyme disease and the coinfections. The table was compiled using information that people posted to a message board, and reflects the dosages of those individuals that shared their treatment information. The dosages listed are provided as an overview and are not meant to suggest an appropriate dose. If you have any questions about drug doses, please contact a doctor who specializes in the treatment of Lyme Disease.

Brand Name	Generic Name	Dose	Description
Tetracycline Doxycycline Minocycline	These go by many brand names	1500mg to 2000mg for Tetracycline 300mg to 600mg for Doxycycline 200mg to 400mg for Minocycline	The tetracycline family of antibiotics are used in treating many different kinds of bacterial infections. Tetracyclines are bacteristatic at low doses. For many bacteria, whose life cycle is short and reproduce within a matter of minutes, low doses will cure them as the bacteria will die before they get the chance to reproduce. But Lyme Disease reproduces over a much longer time frame and will not be eliminated with bacteristatic doses. Higher doses are needed to be bactericidal and to cross the blood brain barrier (BBB). Doxycycline is often the first choice in treatment as it will eliminate an Ehrlichiosis coinfection. An important note is that any mineral supplements such as aluminum, calcium, iron, magnesium or zinc should not be taken within 2 hours of any of these kinds of antibiotics as they will inhibit absorption of the antibiotics.
Amoxicillin Ampicillin	These go by many brand names	1500mg to 4000mg for Amoxicillin	These are part of the Penicillin family of antibiotics and are bactericidal.
Cephalosporin Ceftin Cephalexin Rocephin	These go by many brand names. Ceftriaxione is generic Rocephin	Ceftin 500mg twice a day	Cephalosporins are cousins of the penicillins, and approximately 15% of those that are allergic to penicillin will also be allergic to these drugs. Rocephin is typically taken intravenously (IV).
Mepron	Atovaquone	750mg twice a day	Taken for Babesia in combination with Zithromax (Azithromycin) and Trimethoprim-sulfamethoxazole (the other drugs prevent resistance from developing). Mepron must be taken with fatty foods such as ice cream to ensure proper absorption.
Malarone	Atovaquone + Proguanil	Comes in 250mg/100mg tabs	This is an anti-malarial. It is included here as an alternative to Mepron because it contains Atovaquone.
Bactrim/Septra	Trimethoprim-sulfamethoxazole	Two 80mg/400mg tablets twice per day Because there are two drugs mixed the amount is listed with a /.	Taken with Mepron and Zithromax or Cleocin and Quinine. It has a half life of 12 hours and that is why dosing is twice a day. Drink lots of water with this one to avoid kidney stones. One study found that 89% of those that took Trimethoprim with one of the above combinations were cured of Babesia while many of those that did not include it relapsed. Dr Zhang also recommends taking this drug in combination with Qinghaosu
Trimpex/Proloprim	Trimethoprim	200mg per day	This is the same as above without the sulfamethoxazole. Some people are allergic to the sulfamethoxazole.
Rulid/Rothricin	Roxithromycin	300mg twice a day	This is the only macrolide antibiotic that crosses the blood brain barrier (BBB). Macrolides are typically combined with Bactrim, and if treating for Babesia Mepron is also added. Zithromax and Biaxin are two other macrolides. Macrolides work intracellular. It is not approved by the FDA so you will have to order it from an overseas pharmacy or go to Mexico to get it.
Zithromax	Azithromycin	250mg to 600mg per day	See notes above regarding macrolides. Take it on an empty stomach for full potency. Zithromax will stay in your body for 68 hours, so this drug may be prescribed to be taken every other day. Some people are reporting great success in combining this drug with Plaquenil and Amoxicillin for treatment of Lyme.
Biaxin	Clarithromycin	1500mg per day	This drug is a member of the same family as Zithromax. Zithromax is the more advanced drug.
Cleocin/Dalacin	Clindamycin	600mg three times a day	This drug is taken in combination with Quinine and Trimethoprim-sulfamethoxazole for Babesia. This treatment is hard to tolerate due to hearing loss, fever and headache. Mepron and Zithromax with T/S are a better option.
Quinine	Quinine	650mg three times a day	This drug is taken in combination with Cleocin. See above. Tonic water contains 50 to 70 milligrams of quinine per liter.
Plaquenil	Chloroquine	200mg to 400mg per day	An anti-malarial taken for Babesia in combination with Quinine. It is taken in combination with Doxycycline to combat the cystic form of Lyme. Also used in combination with Biaxin to combat the cystic form of Lyme. In rare cases it has caused irreversible vision damage. You will need to get a retinal exam before taking this drug.
Flagyl	Metronidazole	750mg twice per day	This drug is used to treat the cystic form of Lyme Disease as it is capable of killing spirochetes that are in the cystic form. Flagyl should not be used with Tetracyclines (according to Dr Burrasccano). Use either Penicillins or Cephalasporins. Do not consume ANY alcohol with Flagyl or you will have a severe reaction. Many people find that they get a very strong reaction from this drug and it is advisable to slowly build up to the maximum dose.
Fasigyn	Tinidazole	1500mg to 3000mg per day	This drug also attacks the cystic form of Lyme and is a relative of Flagyl and is supposed to be easier on your liver and better tolerated by the patient. It has a half life of 12 hours so if the dose is split up it can work 24 hours a day.
Rifadin	Rifampin	1200mg per day	Used in conjunction with Doxycycline for the treatment of Bartonella and Ehrlichia.
Tobradex Gentamycin	Tobramycin/Dexamethasone Gentamycin		Both of these drugs are aminoglycosides and are used to treat Bartonella. A bad side effect is that they can cause vestibular damage (hearing/equilibrium).
Dinitrophenol Usnic acid	ICHT	5 to 10 days of in hospital treatment	This is an experimental treatment for Lyme that elevates the intracellular temperature to levels high enough to kill the disease. The cost is $20,000, but you may qualify for a reduced rate of $10,000 if you have tested positive on a western blot test in the last 45 days. Initial reports show that it is very effective in eliminating symptoms but it is unknown if this is a long term cure.
Hyperbaric Oxygen Treatment	HBOT	30 or more 60 to 90 minute sessions	This is a treatment that involves spending time in a pressurized oxygen chamber. The cost is about $150 to $200 per session. Many people report improvement, but this is not a cure. For some reason, children are believed to respond to this treatment better.
Heparin	Blood Thinner	Injection administered at home by patient.	It is believed that blood thinners cause better circulation and increase the effectiveness of antibiotic treatment.
Questran	cholestyramine		This drug binds with bile acids, helping to eliminate them from your system and promote liver health. It also binds with other drugs and supplements, so be sure that if you are taking this in combination with other drugs you do not take them together.
Nystatin Diflucan			These two drugs are used to control yeast problems.
Rife Machine	?		This is a treatment that involves sending a weak electric current thru your body at different frequencies. It is believed that each bacteria/microbe is suceptible to a certain frequency that will inhibit its growth or kill it.

Herxheimer Reactions

An unusual characteristic of this disease is what is known as a Herxheimer reaction (named after a guy named Herxheimer who discovered the phenomenon).

When treatment begins, the antibiotics or other drugs start to kill the bacteria. As the bacteria die off, they release neurotoxins which will actually cause the infected person to have symptoms much worse than they did before they started treatment.

Lyme patients refer to this reaction as a "herx" or as "herxing." Patients and doctors can use these reactions to determine how well a patient is responding to treatment.

A strong reaction says that the treatment is working well. Also, in cases where a diagnosis was made based on symptoms alone, with a negative test for the disease, a Herxheimer reaction can confirm that a person is actually infected with the disease.

Vitamins, Nutritional Supplements, and Herbs

Dr Zhang is a doctor that treats Lyme Disease using Chinese herbal medicine. When visiting his site, click on the link in the lower left corner that says Protocol Flowchart to see specific details on what herbs he recommends and at what dosages. He also includes treatment for Babesia in his protocol.

There is a separate website to order his products, no prescription necessary. The minimum cost of his six month protocol for Lyme, including discounts for repeat orders (set up on automatic shipment), is about $1230, or about $200 a month.

If you are treating for Babesia as well, you can add another $354 to that for a minimum 40 day treatment.

If you would like to be treated by Dr. Zhang and are unable to travel to his office in New York, he does do phone consultations.

A common choice for Lyme patients is Teasel Root tincture. Some people have reported having Herxheimer reactions while taking this herbal, so it appears to be doing something. Grapefruit seed and Grape seed extracts are also very popular, although I have not tried these myself.

Another popular type of supplement is immune transfer. This is in the form of colostrum from either cows or goats. Colostrum is the first milk after a cow or goat gives birth. It is nature's way of transfering the immunity that the mother goat or cow has built up over the span of its life to the newborn. This first milk allows the newborn to have a defense against infection while it is building its own immune system.

There are immune transfers on the market that have been designed especially for Lyme Disease and coinfections. There is even a former congressperson who believes he was cured of Lyme Disease after drinking colostrum from a cow whose udder was injected with Bb bacteria a few weeks before it gave birth. Most immune transfers come in pill form, so you won't actually have to drink the milk.

I myself have used Garlic, Astragalus, Milk Thistle, Reishi, Ginseng, Ginko Biloba, Aloe juice and Olive Leaf extract. In addition to being an antiviral, Milk Thistle helps regulate your liver, which can be a good thing if you are on heavy antibiotics and other drugs. Garlic is very good for your heart and immune system, and it also has anti-bacterial properties. I eat 1 whole raw clove of garlic every day. Astragalus and Reishi regulate your immune response. Ginko opens up and dialates your blood vessels and allows things to flow more easily. Drinking 2 ounces of aloe juice a day helps to fight off viruses, and surprisingly it tastes good too.

Name	Other Names	Dose	Description
Allicin	Garlic extract	20mg 3 times per day	This is a potent garlic extract recommended by Dr Zhang for treating Lyme. Although allicin does have antibacterial properties, studies have proven that allicin breaks down easily and does not make it into the blood stream. Dr Zhang also recommends other herbs for treating Lyme.
Garlic	Raw Garlic	1 clove per day (or more), eaten raw and uncooked.	This is hard for a lot of people to imagine even doing, but those that have done it swear by it. I was surprised to find that I really like the way it tastes, and would eat it even if I didn't have Lyme. You may have stinky breath, but what if it works? And they say that the chemical that makes the smell is one of the active ingredient in garlic, so you are wasting your money if you buy a supplement that is "unscented." It has been proven that garlic has anti-bacterial properties, and there are many active components to it that have still not been identified. Garlic also has many other health benefits.
Olive Leaf extract	active ingredient is Oleuropein (pronounced oh-lee-or-oh-pin)		This supplement has been proven to have anti-bacterial as well as anti-viral properties, and is considered a natural antibiotic. It has been credited with having anti-fungal, anti-yeast and anti-protozoal properties as well. It is also said to inhibit microbes from reproducing.
Qinghaosu/Wormwood	Latin name Artemisia annua Careful here, there are Wormwood supplements being sold that are of a different species which are toxic. It also goes by the name Sweet Annie or Qinghao.	3 grams per day	This is an herb in Chinese medicine used to treat malaria. The World Health Organization has a page on this herb here. Studies have proven it to be 100% effective for treating malaria, even strains that are resistant to Quinine and Chloroquine, and Dr Zhang uses it to treat Babesia. He also recommends combining this herb with Astragalus root, Dang Shen (Codonopsis pilosula), and the drug Trimethoprim.

There are so many supplements that it is hard to keep them all straight. I have reported on the ones that I've heard a lot of people say work.

Bacteria and Yeast

Acidophilus, an over the counter probiotic supplement available at any vitamin or drug store, contains good bacteria that help with yeast and gastro-intestinal problems, and it is an important supplement. When taking heavy doses of antibiotics you will kill off all of the friendly bacteria in your body that keep your gastro-intestinal system healthy.

Among other things, these bacteria keep yeast at bay, and when these bacteria are killed by your antibiotics you will be prone to yeast infections. And I'm not just talking about women here, men can get yeast too, and it can be very painful (burning during urination). Keep in mind that if you take your acidophilus at the same time you do your antibiotics you will be killing them before they have a chance to do any good. It is suggested that you take your antibiotics two hours apart from your acidophilus. Some people have had success taking it just before going to bed so that it has all night to do its work.

Check with your local grocery store to see if they carry acidophilus milk. It is regular milk that has a live culture of acidophilus in it. Many people prefer refrigerated live cultures as they are more potent. You can also read the label of yogurt to find out if it has live cuture bacteria in it.

Other solutions to the yeast problem include the prescription drugs Nystatin and Diflucan.

Diet

Although difficult for many people to follow, an Atkins type diet is a wise move for people who have Lyme or other bacterial infections. The reason is that bacteria feed off of sugar and carbohydrates. A protein diet will limit the ability of bacteria to grow and thrive in your body. Things like sweets, soda and fruit juice should be eliminated from your diet, or at the very least kept to a minimum.

Dr. Joseph Burrascano's "Diagnostic Hints and Treatment Guidelines" suggests that use of alcohol is a strong indicator that a patient will relapse. Alcohol suppresses the immune system, and people with Lyme Disease will need all the help they can get.

Costs of Treatment

Treatment for Lyme Disease and its coinfections can be very expensive. I've already alluded to the costs of some of the treatments listed above.

The drugs alone can be expensive. But the situation is further complicated by the fact that many insurance companies do not believe that Lyme Disease is a chronic illness, and think that 3 to 6 weeks of antibiotic treatment are all that is necessary to cure the disease. As a result, insurance companies may refuse to pay for treatment beyond a short course of antibiotics.

Another complication is that some doctors who specialize in treating Lyme Disease are no longer willing to battle insurance companies to pay for treatment, and require cash payment up front. Neither one of the two best labs for testing will bill insurance companies.

And this is to say nothing of the fact that many people with chronic Lyme are not able to work, and as a result may be left without an income or medical coverage.

However, all that being said, oral antibiotics are for the most part inexpensive. Even if you must pay all of your costs out of pocket. Doxycyline and Amoxicillin are cheap. So is Bactrim. So is Flagyl. So is Plaquenil. Those are most of the pieces of the puzzle for many people.

The place you will run into expenses is with the macrolides (Rulid, Zithromax, and Biaxin). IV drugs are also very expensive, although many LLMD's are moving away from the use of IV drugs. And you can spend a fortune on blood tests if you want to. And you can spend a fortune on nutritional supplements if you want to.

Is There a Cure?

It depends upon how you define "cure." Is it possible to kill every last Lyme bacteria (or ehrlichia, or babesia, etc)? The answer to that is probably no. But that doesn't mean that you can't get well and stay well. There are many common viral, bacterial and protozoal diseases that people will carry for the rest of their lives once they are infected. And being a carrier of these diseases does not necessarily mean that you are contagious, have symptoms, or need further treatment.

Most people are exposed to the virus that causes chicken pox (it is actually a strain of herpes virus) when they are very young, and they carry the virus for the rest of their lives. It is this same virus that causes shingles in adults. It is believed that the virus is carried throughout your life and shingles only develops if the immune system is weakened and the virus is allowed to get out of control.

Another common virus is HPV (human papiloma virus), the virus that causes warts. Over 80% of people carry one of the many (over 70) strains of this virus. Usually children will get warts on their hands because they are always touching things and are not real good about keeping their hands clean. Over time your body develops immunity to it and the warts disappear. But you still carry the virus, and warts may reappear from time to time, usually when you are stressed.

Malaria is a protozoal disease that is in your system forever once you are infected. Streptococcus (strep throat) is an example of a common bacteria that will stay in your system.

So while you can't say that you will every be completely rid of Lyme, you can be "cured" in the same sense that you can be cured of chicken pox, malaria and other diseases.

Is it Sexually Transmitted?

This is an area of controversy, and one where little formal study has been done. Some couples who have Lyme swear they gave it to their husband/wife. In other situations, the whole family has Lyme, so it is possible for members of the same family to be infected separately.

How can it be known whether it was passed from one person to another or if both people were infected by a tick bite? After all, many people with Lyme do not remember ever getting bitten by a tick, and it is reasonable to assume that couples could have been infected at the same time while traveling through a tick-infested area.

There has been at least one case where a doctor has found Bb bacteria in semen. However this does not necessarily mean that the disease can be transmitted sexually. The test only proves that the bacteria was present, not whether or not it was alive, or even a whole cell (the different bands on tests identify different parts of the bacteria). And this is an important distinction because as bacteria are killed by antibiotics or the immune system, the dead cells are broken up and filtered out through the kidneys and passed in urine through the urethra, the same path used by semen. It is certain that these dead cells could end up in a semen sample if they are travelling down the same pipe.

The AIDS virus (HIV) is present in saliva but you cannot get AIDS from kissing someone.

And syphilis (another spirochetal bacteria) is no longer contagious after you are successfully treated for the disease, so even if Lyme is sexually transmitted it may be assumed that it is no longer contagious after successful treatment. Especially when you consider that syphilis is much more highly contagious (you can catch it thru kissing). So if Lyme is less contagious (you can't get it from kissing), you would think that if there were no active Lyme infection then it could no longer be spread, even if it were proven to be sexually transmitted.

I have spoken to two doctors (LLMDs) about this, and not surprisingly they each have their own opinion on the subject. They base their opinions on over a decade of seeing hundreds of patients. One said that if Lyme were sexually transmitted he would see a lot more cases where both spouses are infected, and he just isn't seeing that. There would also be a lot more cases from the population at large if Lyme were transmitted easily through sexual intercourse. The other doctor said he believed that it is sexually transmitted, but only when there is an active infection and you are not taking antibiotics. In other words, if you have no symptoms and have finished treatment you are no longer contagious, or if you are taking antibiotics you are not contagious.

I personally do not believe that enough evidence exists to support the idea of sexual transmission of Lyme. After 30 years since this disease was identified I think it would be readily apparent if it were sexually transmitted. Perhaps this is why few studies have been done.

Links

For more about Lyme Disease and other tick-borne illnesses, please visit these valuable sources from which I derived much of the above information:

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Lyme Disease: A Basic Education By Matthew Goss Published by Lymebook.com

Lyme Disease: A Basic Education
By Matthew Goss
Published by Lymebook.com