Life After Lyme Disease

Lyme disease is a condition transmitted by the saliva of ticks when they feed on a host (human or animal), and is caused by the Borrelia burgdorferi bacteria.  It is thought that the Western blacklegged tick and the deer tick are the primary carriers of the Borrelia burgdorferi, and these are common throughout northern America and southern Canada, and high risk areas of infection for humans include forest and woodland edges and open grassy areas.

Diagnosing Lyme Disease

Testing for the Borrelia burgdorferi infection

Lyme disease typically manifests in the early stages as a skin rash, often with a characteristic ‘bulls eye’ inflammation pattern, which can take between 3 to 30 days to develop.  However it has been estimated that in as many as 30-50% of cases no rash will develop at all, and this can make diagnosis in the early stages very difficult.  If left untreated Lyme Disease can develop into more serious symptoms, which can include meningitis, heart problems, arthritis, nerve damage (peripheral neuropathy) and inflammation of the spinal cord and brain (encephalomyelitis).  Lyme disease can be challenging to diagnose, as many of the symptoms are common across a wide range of other conditions, and there are as yet no conclusive tests for identifying the disease in its early stages (serological testing is only useful when the disease has progressed further). Many patients with Lyme disease are not correctly diagnosed in the early stages, and this can lead to months and even years of unnecessary suffering.  Lyme disease can actually be treated very successfully with either oral or injected antibiotics if caught in the early stages, but if left untreated the condition can become very serious and then it can be much more difficult to combat the disease and its symptoms once it has turned chronic.  Many physicians are still relying on serological testing to identify the condition, but this is simply not reliable enough and has been shown to fail to detect the Borrelia burgdorferi infection in as much as 20% of clinical tests.  One of the reasons current tests are ineffective in the early stages of the condition is that it can take as much as six weeks after the initial infection for the Borrelia burgdorferi bactera in the blood to reach large enough levels to show up in testing.  Also this bacteria can sometimes lie dormant for long periods of time, and this can make a diagnosis difficult if it emerges later on, as the patient may not connect the condition with any exposure to ticks that occurred in the past.

Blood test for Lyme Disease

This is why it is so important that physicians are educated in the process of identifying and diagnosing Lyme disease in its early stages, and the key to this is not clinical tests but possessing a good epidemiological understanding about the risks of patient exposure to infected ticks.

Surveillance

Physicians also play a vital role in the surveillance of ticks and can help to identify new endemic areas quickly by being able to diagnose the disease effectively, and also by reporting all suspected and confirmed cases to the local Health Authority.  This process has helped researchers to pinpoint infected tick emergence in Canada, and has shown tick populations spreading in Ontario, Nova Scotia, Manitoba, Quebec and British Columbia. Through enhanced surveillance and increased awareness of symptoms and treatments, physician can play a crucial role in minimizing the impact of Lyme disease as it spreads to new areas.

If you know anything about Lyme disease, it is that there are conflicting opinions on how to treat the problem. In fact, this has been a sticking point for many years and it does not seem that things are going to calm down anytime in the near future. Many doctors, scientists and Lyme disease sufferers feel that long term antibiotics are the best way currently available to treat Lyme disease.

On Wednesday, February 17, 2010, New Hampshire House lawmakers approved a bill that would make it easier for doctors in the state to treat Lyme disease through the use of long term, prescribed antibiotics.

Why is this such a big deal, you may ask? In the past, doctors have been reluctant to prescribe long term antibiotics because many were skeptical of the existence of a chronic form of Lyme disease, primarily because of the flawed guidelines issued by the Infectious Disease Society of America (IDSA) who has consistently ignored scientific evidence that does not agree with their position. In addition many doctors are afraid that the IDSA will go after them and try to revoke their license to practice medicine, as has happened in several cases. With the passage of this bill, New Hampshire doctors will be able to treat their patients as they and their patients feel is best, without any intrusion by the IDSA.

Rep. Jen Coffee (R) of Andover had this to say about passing the bill: “Any medication has the potential to have a problem, but we allow long-term antibiotic use for treatment of acne — acne of all things.” She added, “Why wouldn’t we allow it for Lyme disease?”

Many people don’t think Lyme disease is a big problem, but once they take a closer look at the statistics they find out differently. Believe it or not, more than 25,000 new cases of Lyme disease are diagnosed across the country every year, and since Lyme disease is so frequently misdiagnosed, the true number of cases is most likely much higher. This has led to New Hampshire, as well as several other states, passing legislation to protect doctors who actually try to treat this debilitating disease. The states that have yet to have done so are holding back because they feel that long term treatments need to be studied in more depth, no doubt the result of the confusion caused by the controversy with the IDSA guidelines.

Lawmakers and doctors are not the only ones supporting the bill. Many Lyme disease sufferers have been actively lobbying for such bills to be passed in their state. They are tiered of being told by doctors who follow the IDSA guidelines that it’s all in their heads and they should just go home and suffer. Furthermore, because of these guidelines many insurance companies have began to refuse to pay for antibiotic treatments for chronic Lyme disease, adding more problems to the lives of those who suffer from this disease.

Kathy Kettmann a Lyme disease sufferer and supporter of the New Hampshire bill said: “I couldn’t walk. I couldn’t talk,”… “I was very sick, and to be put in a car for five hours to go to the doctor because we couldn’t get treated in New Hampshire was hard.”

It yet remains to see if the New Hampshire State Senate will pass the bill. It will also be interesting to see if more states follow suit with similar legislation.

Parker Posey is questioning conventional medicine after the pills she was prescribed failed to cure her of Lyme disease.

The Best In Show star was forced to pull out of an off-Broadway play earlier this year (2009) to focus on battling her tick-borne illness.

Doctors had put Posey on a course of antibiotics but after that treatment failed to restore her health, she decided to try a holistic approach and treat her Lyme disease with supplements and a complete change in her diet. She felt so much better after her holistic treatment that she decided to lend her backing to a new documentary, Rethinking Cancer, about patients who seek out alternative methods of treatment.

She says, “As someone who dealt with Lyme disease recently, I had the opportunity to approach it both with conventional medicine (antibiotics) and homoeopathic remedies and supplements. The first round of antibiotics did not destroy all the bacteria and I made a decision not to take them anymore and instead approach it purely holistically – through the help of my homoeopathic doctor, who guided me with my diet and gave me the natural supplements to bring my body back to its vitality.
“It raises the questions: How can a natural approach to healing oneself be considered so unconventional? Why do we think we can’t play an active role in getting healthy? Why do we give ourselves away so easily to pharmaceuticals that deplete our system and confuse the natural healing process?”

Most people who are infected with Lyme Disease also have one or more co-infections. If you have been diagnosed with Lyme Disease it is very important that you are tested for other co-infections that can often tag along with the Lyme. These co-infections are other bacterium, viruses and protozoan parasites such as Babesiosis, Bartonella, Ehrlichiosis, Mycoplasma, Rocky Mountain spotted fever, Colorado Tick Fever, Tularemia , Powassan encephalitis and others. It is very important to test for these as treatment will often be different depending on what type of co-infection one has.

Current consensus is that co-infections need to be treated first in order to successfully treat Lyme Disease as treatment of Lyme Disease becomes more complicated when there are co-infections present. Often treatment of Lyme is more successful when co-infections are first eliminated. Many Lyme Disease researchers now believe that co-infections are one of the reasons why some people do not respond to Lyme Disease treatment.

Due to feeling extremely ill over the last several months I have neglected in updating this website. I am feeling a bit better now so I will be posting on a regular basis once more.

Basically my LLMD had me on a very strong dose Doxycycline antibiotics for 5 months. During this time I had gotten extremely sick because the antibiotics wrecked havoc in my body. I had to finally stop taking them because the Doxycycline had pretty much shut down my digestive system and made me horribly ill. For some time after I stopped the antibiotics I was feeling a bit better but then I got a lot worse fast.

I am now trying to deal with this by using natural methods that I found in my extensive research on Lyme Disease. I am taking 5 different natural antibiotics on a daily basis and many other supplements to strengthen my immune system and make my body inhospitable to the Borrelia burgdorferi bacterium.

I have also changed my lifestyle quite a bit. No more coffee and alcohol. No processed foods. Trying to eat as much raw foods as possible, get more sleep and drinking lots more water to help detox.

As time and my health permits I will start posting detailed info about the supplements I am taking and how things are progressing. So far it has been about a month on the supplements and I am definately feeling better. Lets see how things progress from here.

Had my second appointment with the infectious disease specialist today, and what a disappointment. I told him that I am not feeling better and my joints have actually gotten worse. The Doctor said that four weeks of Doxyciclene is plenty of time for it to kill the bacteria. He said that if I’m not feeling better it is because my body does not realize that the Lyme is gone. Then he proceeded to tell me to take Aleve (Naproxen) for my joint pain.

I did some reading earlier and found out that the reason Lyme Disease is difficult to eliminate through the use of antibiotics is because it forms cysts that the antibiotic cannot penetrate and hides in these cists. When I asked the doctor about it he appeared not to know anything about it simply replying that Lyme Disease is caused by a bacteria and antibiotics taken over a four week period will kill any bacteria in your body.

I couldn’t believe my ears! This was supposed to be an infectious disease specialist! He’s supposed to know better! But it looks like this doctor is totally useless. He gave me a very strong impression that he knows nothing of Lyme Disease and was basically writing me off.

Looks like I will be searching for a new Doctor.

It has been about tree weeks since I had started my antibiotic treatment with Doxycycline 100MG twice a day for 30 days and I don’t think it’s working. During these three weeks I do not feel much better. The nausea is a little better but the joints in my fingers are now swollen and painful, almost feels like arthritis. This is making it difficult to work on my computer which is my main source of income.

I will be going back to the Doctor soon and will see what he says.

I had my appointment with an infectious disease specialist today. The Doctor seemed very casual about it, almost like it’s not a big deal. That did not make me feel all that good about this Doctor but I will give him a chance.

He asked me a long list of questions trying to narrow down my symptoms and try to evaluate how far the Lyme Disease has spread throughout my body.  Based on that the Doctor said that he thinks I had Lyme Disease for less then a year.

He prescribed Doxycyclene 100MG twice a day for 30 days saying that it should clear it up fairly quickly. Hopefully it will work. He also gave me a referral to get a cardiogram done to make sure that the Lyme Disease did not spread to my heart. He said it was just precautionary.

I’m really hoping the Doxycyclene will work.